11. Education for life

Education has always been fundamental to caring for people with diabetes. Over the last 20 years the process of educating people with diabetes has evolved, moving from a perspective in which education was often a case of ‘telling’ the person certain facts to a more structured and complex activity. Traditionally, people with diabetes assumed a passive role, receiving information that might or might not have been individualised to their lifestyle. Currently, a more active role on the part of the person with diabetes is advocated, in which choice and participation is promoted. In addition to offering information, education should help people to acquire psychomotor and problem-solving skills to enable them to self-manage their diabetes alongside all the other demands of daily living. Diabetes education is a major challenge for healthcare professionals as the number of people with diabetes and the complexity of self-management continues to increase.

This chapter considers the development of diabetes education, from provision of information to a more complex activity in which the individual’s capability to actively self-manage a difficult chronic condition. The process of providing education will be discussed, as will a range of topics that are to be covered when providing a comprehensive education programme to enable people to successfully self-manage their diabetes.

During the last 20 years, great changes have occurred in the provision of diabetes services. The delivery of care has moved to being based predominantly in primary rather than secondary care, the diabetes teams have extended and become more specialised and the role and number of diabetes nurse specialists and practice nurses has radically altered the composition of the diabetes work force. Furthermore, the incidence of diabetes has increased and the treatment and management regimens are much more complex.

In view of such changes it is not surprising that diabetes education has also progressed. Lucas and Walker (2004) reviewed the changing modes of diabetes education over the last 20 years and noted that during the 1980s and early 1990s education was usually delivered during a routine hospital outpatient clinic. It was likely that the education was largely didactic in nature, conventionally the healthcare professional would give advice and information to the individual in the expectation that the advice would be followed. This approach did not allow individuals to balance diabetes self-management with the exigencies of daily living, for example, not having time to make a healthy meal, being unable to eat at an ideal time or not being able to take exercise despite knowing that this would benefit blood glucose levels. Individuals need to know how to manage these situations and such problems cannot be left to be successfully resolved at the next clinic visit. Didactic teaching did not help people to develop skills in which trade-off and compromise were acceptable.

As it was realised that an ad hoc approach to education was not ideal, more structured approaches were required. In addition, programmes that fostered decision making and problem solving, as well as providing the baseline information for diabetes self-management, were required. The expansion in the numbers of people presenting with diabetes and the increasing complexity of management regimens necessitated a greater involvement of all healthcare professionals in diabetes care. Of particular importance is the increase in the numbers of specialist dieticians, specialist podiatrists, diabetes nurse specialists, practice nurses, nurse practitioners and community nurses, who all play a major part in the development and delivery of diabetes education programmes.

It is generally accepted that people need knowledge and skills, and the motivation to use these, to begin self-management of diabetes. According to the European Diabetes Policy Group Guidelines (International Diabetes Federation (IDF) Europe 1999a) for those with type 1 diabetes:

Similarly, for those with type 2 diabetes:

These quotations plot out the scope of education and immediately indicate that knowledge alone is not the goal. Knowledge is essential, but on its own is not enough, to enable effective self-management of diabetes (Snoek 2003). If educating people was simply about remedying an information deficit then the task would be easier. When psychomotor skills and psychological attributes such as empowerment and self-responsibility are added in, the whole endeavour becomes more challenging.

The definitions and guidelines from the IDF were designed to ensure that diabetes strategies were consistent at a European level, however, the sentiments are also endorsed at more local levels. For example, the National Service Framework (NSF) for Diabetes (Department of Health (DH) 2001a) published 12 standards, the third of which emphasised the need for a broad reaching view of educating people with diabetes. The aim of Standard 3 was:

The accompanying standard is set as follows:

When the details of the standard are considered in greater detail it can be seen that education is at its core. The range of the standard covers much more than an understanding of diabetes as a medical condition. To experience the best possible quality of life might also involve, for example, symptom management, access to social and other services, managing work and the resources of employment services and developing strategies to deal with the psychological consequences of illness.

Successful diabetes self-management is notoriously difficult to achieve. Research relating to diabetes self-management confirms that people with diabetes are often unable to manage their condition as fully as might be desired by themselves and by healthcare professionals (Donnan et al 2002, Reed et al 2003, Vermeire et al 2003). Suboptimal self-management can translate into poor metabolic and psychological outcomes, although as DeVries et al (2004) point out, the causes of suboptimal glycaemic control are multifactorial. Furthermore, developing educational interventions to help improve self-management is also difficult (Hampson et al 2001, Norris et al 2001).

Although a robust case can be made for the need for education, the way in which it is best provided is not clear. For example, the National Institute for Health and Clinical Excellence (NICE 2003) conducted a systematic review of the available evidence to inform the provision of educational programmes. As a result of the review it was not possible to advocate any particular educational programme. However, it was possible to recommend that a programme of structured diabetes education covering all major aspects of diabetes self-care should be made available to all people with diabetes shortly after diagnosis and then on an agreed continuing basis.

The provision of education is a complex intervention and, as such, it is a difficult area to research. Despite the wealth of papers dealing with education of people with diabetes the quality of research on this subject has often been criticised (Brown 1992, Ellis et al 2004, Griffin et al 1998). Cooper et al (2001) explored the effects of education by analysing 12 meta-analyses based on research into education for people with a chronic disease where behaviour modification is a part of the treatment regimen. While this review was broader than diabetes, they found that the methodological rigour of the research was often poor; therefore, despite a large volume of work being conducted, it was not of good-enough quality to enable it to be used as evidence on which to base practice. Nonetheless, the authors were able to recommend that ‘practitioners use theoretically based teaching strategies which include behaviour change tactics that affect feelings and attitudes’ (Cooper et al 2001, p. 107).

Healthcare professionals are therefore often in a situation where they must provide education programmes for people with diabetes but there is a dearth of information to inform their practice. This is an area that is now receiving greater attention. For example, if the Diabetes UK website is consulted (www.diabetes.org.uk), a range of studies evaluating education programmes can be viewed.

The NICE Health Technology Appraisal mentioned above (NICE 2003), described structured education as:

In response to the NICE report, the Department of Health and Diabetes UK established the Patient Education Working Group in May 2004, which reported in 2005 (DH & Diabetes UK 2005). The working group established a set of criteria with recommendations that implementation of the criteria would ensure a high-quality, structured diabetes education programme. These are:

Three of the most widely cited structured education programmes that fulfil these criteria are: the Diabetes Education for Self-Management for Ongoing and Newly Diagnosed programme (DESMOND see: www.diabetes.org.uk and www.desmond-project.org.uk); the Dose Adjustment For Normal Eating (DAFNE Study Group 2002) and the Diabetes X-PERT Programme. These will be considered in turn.

A more locally based structured education programme, which has been evaluated by a randomised controlled trial, is the Diabetes X-PERT programme. This is based on the theories of empowerment and discovery learning for adults. Results were positive in the biomedical and psychosocial outcomes of the programme. This programme offers training and quality assurance for healthcare professionals. Further details can be found on www.xpert-diabetes.org.uk. (Department of Health (DH) 2001b).

Education can be facilitated on a one-to-one basis, in small groups or in a more formal seminar or discussion group. However, adults learn best when the principles of adult education are used (NICE 2003). Education can take place in a person’s home, at a health centre or at a diabetes centre, in the community or in hospital. While it is crucial that a structured programme is the foundation of education, casual and opportunistic education will also occur in relation to episodes, such as illness, that demand new or revised knowledge and skills. Much has been written about group education versus individual education (Cooper et al 2002, Griffin et al 1998, Sumner et al 2001) and the balance will depend on circumstances, such as numbers of people requiring education and staff resources. Whereas education for those with newly diagnosed type 1 diabetes is usually delivered on an individual basis, increasing numbers of people newly diagnosed with type 2 diabetes are lending themselves to group education. As yet, there is little evidence to inform the relative merits of which approach is best employed, with which type of person and in which circumstances. However, group education should also be seen as an opportunity for individuals to share experiences and offer each other mutual support.

According to the NICE report (NICE 2003), there are no trials specifically concerned with the content of initial education for those with type 1 diabetes. However, there is a reasonable consensus of professional opinion of the important issues that should be included in diabetes education programmes (Audit Commission 2000, International Diabetes Federation (IDF) Europe, 1999a and International Diabetes Federation (IDF) Europe, 1999b, NICE 2003). As education is delivered by a multidisciplinary team it is vital that the content of education is agreed to avoid conflicting information. All members of the team will be involved in educational care from time to time as the need arises. When developing programmes, people with diabetes should be involved to help determine content as it is known that healthcare professionals and individuals with chronic diseases have differences of opinion regarding the content of educational programmes (Clark & Hampson 2003, Woodcock & Kinmonth 2001).