11. Education for life

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Introduction 245
The evolving nature of diabetes education 246
Why educate people with diabetes?246
Diabetes self-management 248
Structured diabetes education 248
Planning education 252
Developing educational programmes 254
Topics that require educational input 257
Conclusion 277
References 278
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.
WHY EDUCATE PEOPLE WITH DIABETES?
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:
It is the responsibility of the diabetes team to ensure that the person with diabetes can follow the life-style of their educated choice, achieved through the three elements of empowerment: knowledge, behavioural skills and self-responsibility. (IDF 1999b, p. 719)
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:
To ensure that people with diabetes are empowered to enhance their personal control over the day-to-day management of their diabetes in a way that enables them to experience the best possible quality of life.
The accompanying standard is set as follows:
All children, young people and adults with diabetes will receive a service which encourages partnership in decision-making, supports them in managing their diabetes and helps them to adopt and maintain a healthy lifestyle. This will be reflected in an agreed and shared care plan in an appropriate format and language. Where appropriate, parents and carers should be fully engaged in this process.
DIABETES SELF-MANAGEMENT
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).
STRUCTURED DIABETES EDUCATION
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).
The NICE Health Technology Appraisal mentioned above (NICE 2003), described structured education as:
A planned and graded programme that is comprehensive in scope, flexible in content, responsive to an individual’s clinical and psychological needs and adaptable to his or her educational and cultural background.
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:

▪ have a stated philosophy
▪ to have a structured, written programme
▪ to have trained educators
▪ to be quality assured
▪ to be audited.
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.
DIABETES EDUCATION AND SELF-MANAGEMENT FOR ONGOING AND NEWLY DIAGNOSED
Whereas DAFNE is designed for people with type 1 diabetes, the Diabetes Education and Self-Management for Ongoing and Newly Diagnosed (DESMOND) programme provides structured self-management group education to individuals who are newly diagnosed with type 2 diabetes. The DESMOND programme was based on chronic disease management programmes in the USA and European models of care that included structured diabetes education. At the time of writing, the programme is being evaluated according to the Medical Research Council Framework for evaluating complex interventions (Campbell et al 2000). A randomised controlled trial, the largest of its kind in newly diagnosed adults with type 2 diabetes, is in progress and is due to report in 2007.
The programme can be offered as a 1-day 6-hour programme or in two half-day sessions or three 2-hour sessions. Groups consist of between five and ten individuals and are facilitated by two trained educators. Part of the programme involves personal goal setting and action planning to achieve goal outcomes. Goal setting and action planning increases self-efficacy and this has been shown to lead to improved biomedical and psychosocial outcomes (Bodenheimer et al 2002, see Chapter 3).
Meanwhile in the UK and, following NICE guidance mentioned above, the DESMOND programme is being rolled out to primary care services with the backing of the DH. It is considered to be the only widely available programme that currently fulfils the criteria for structured diabetes education for people with type 2 diabetes.
There are other examples of structured diabetes education programmes (Everett et al 2003, Sumner & Dyson 2004) and research in which structured diabetes education has been evaluated (Anderson et al 1995, Cooper et al 2003, Griffin et al 1998, Hampson et al 2001, Norris et al 2001, Trento et al 2002). All this work is contributing to an evidence base to guide this area of practice and in so doing is slowly making up for a long-recognised deficit in this aspect of care.
DOSE ADJUSTMENT FOR NORMAL EATING
One programme that has been specifically applied to diabetes is the Dose Adjustment For Normal Eating (DAFNE) project. This programme, which is jointly funded by the DH and Diabetes UK, involves structured training in intensive insulin therapy and self-management. The main principles of the course are:

▪ that individuals learn the skills required to adjust insulin to match the free choice of carbohydrates eaten during a meal
▪ to promote self-management and independence from the diabetes care team
▪ to do this using the principles of adult education in a group setting.
The programme is based on a well established and evaluated inpatient model pioneered in Düsseldorf (Muhlhauser et al 1987). The objective of the programme was to evaluate whether such a training programme could lead to improved glycaemic control and quality of life (DAFNE Study Group 2002). Further details can be obtained from www.dafne.uk.com.
Case study 11.1

Sue had lived with type 1 diabetes for 29 years. She had been on a multiple injection regimen of insulin for the past 10 years and regularly monitored her blood glucose levels. She had been frustrated because despite doing her best she found that adjusting her insulin doses was a bit ‘hit and miss’ and she often ended up with too high or too low readings. She felt angry much of the time, and burdened – as if diabetes ruled her life. She attended a DAFNE training programme and learned (or in her case relearned) about carbohydrate counting. She also learned a more precise method of working out exactly how much insulin she needed for the amount of carbohydrate she ate. By following this regimen she managed to reduce her insulin dose and yet be more flexible with her diet in terms of quality and quantity. Her glycaemic control improved, she had less hypoglycaemia and she managed to lose some weight. She described her new knowledge and skills as ‘liberating’.
Hence, Sue would remain on her multiple injection regimen as this will maximise her opportunities for dose adjustment. Sue would learn how to use quick-acting insulin according to the amount of carbohydrate that she had eaten. During the DAFNE programme, she would have worked out how many units of quick-acting insulin she needed for each 10 g of carbohydrate that she ate. This ratio of insulin units : carbohydrates varies from person to person and sometimes at different times of the day. During the DAFNE programme, Sue had worked out that her insulin units : carbohydrate portion ratio was as follows:

▪ Breakfast: 2 units of quick-acting insulin per 10 g of carbohydrate.
▪ Lunch: 1 unit of quick-acting insulin per 10 g of carbohydrate.
▪ Evening meal: 1 unit of quick-acting insulin per 10 g of carbohydrate.
DIABETES X-PERT PROGRAMME
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).
PLANNING EDUCATION
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.
VISUAL AIDS
Materials used for education will include audiovisual and computer-based material, posters, leaflets, diagrams and practical equipment such as food models. Visual aids should encourage interaction between educator and the person with diabetes (Llahana et al 2001). Materials are very important to assist with the educational process and must be of the highest standards of accuracy as well as comprehensible, relevant and culturally specific.
Healthcare professionals using literature to support their education sessions should be aware of the problems of readability and literacy status of the material that they use. These problems are compounded where English is not a person’s first language. There is, therefore, a considerable need for educational materials which are culturally specific. Diabetes UK has made a determined effort to provide educational material suitable for a wide range of individuals, cultures and topics (see www.diabetes.org.uk).
TIMING OF EDUCATION
At diagnosis, the person newly diagnosed with diabetes is usually anxious and although appearing keen to learn, is not necessarily in the most receptive frame of mind to acquire new knowledge. An education programme must therefore be planned and staged to take into account the person’s ability to assimilate information (Coates 1999).
The first stage of education commences at the time of diagnosis. The person will require emotional support and might want to ask questions regarding diagnosis, cause and implications of diabetes. This is a time when the educator will learn about the physical, psychological, spiritual and cultural needs of the individual and what is important to him or her. For example, the newly diagnosed individual might be terrified that the diagnosis will impact negatively on work or relationships, or on his or her abilities to be a parent or indeed to become a parent. A needs assessment will inform the educational content of immediate and ongoing education. The educational programme should be structured to provide the person with essential facts based on what questions he or she is asking and what he or she needs to know to be safe.
When commencing education with the individual concerned, it is important to determine first how much the individual already knows about diabetes and to discuss any misconceptions that he or she might have. It is common for people to be aware of the worst complications of diabetes, such as amputation or blindness, and many believe that these are inevitable.
The second stage requires a learning plan that has more detailed education on aspects of diabetes that address both the individual’s agenda and that of the educator (Box 11.3). Although the healthcare team has its own agenda for education, individuals determine which area they want to learn about next. Educational material must be presented in small, bite-sized chunks to enable the person assimilate it. Inviting questions, reiterating and encouraging the person to verbally reflect what has been said will assist the individual to make sense of his or her new knowledge and relate it to his or her own circumstances. Reinforcement with written material will help the individual to remember new facts but should not be a substitute for face-to-face collaborative education (Ellis et al 2004). It is good practice to review what the person understands of the content covered at a previous session prior to moving on to the next topic. This helps to secure the knowledge and skills acquired and give an opportunity to discuss how these have been implemented into the real world of living with diabetes. Collaborative goal setting will help the individual to ground his or her new-found knowledge into his or her unique circumstances.
Checklist detailing recording of topics in diabetes education programme
Alcohol
Contact numbers
▪ surgery
▪ community nurse
▪ hospital clinic
▪ diabetes nurse specialist
Complications
▪ annual review
▪ eyes (blurred vision at diagnosis)
▪ kidneys
▪ feet
▪ blood pressure/coronary heart disease
▪ sexual health
Diabetes UK
Department of Social Security benefits
Diet
▪ seen by dietician
▪ date to see dietician
▪ current weight, body mass index and waist size
▪ importance of regular meals (people with type 1 diabetes especially)
▪ diabetic foods
▪ alcohol
▪ special occasions
▪ what to do when unwell
Driving
▪ DVLA
▪ insurance
▪ planning a long journey
▪ what to do if hypoglycaemic (not relevant if controlled by diet or a biguanide)
Employment
▪ informing employer
▪ shift work
▪ can register disabled
Exercise
▪ benefits of exercise
▪ forms of exercise
▪ adjusting insulin (if relevant)
▪ adjusting diet
Hypoglycaemia (if relevant)
▪ what causes it
▪ how to recognise it
▪ how to treat it
▪ what happens if you do not recognise or treat it
▪ telling your family and friends
▪ telling employers
▪ exercise
▪ driving
▪ nocturnal hypoglycaemic episodes
▪ use of glucagon
Hyperglycaemia
▪ what does it feel like
▪ what causes it
▪ how to recognise it
▪ how to treat it
▪ what happens if you do not recognise or treat it
▪ when to call for help
Identification
▪ carry identification of diagnosis of diabetes
Insulin (only if relevant)
▪ how it works
▪ how to inject (including mixing insulins if necessary)
▪ when to inject
▪ where to inject and rotation of sites
▪ storage of insulin and equipment
▪ disposal of equipment
▪ availability of equipment
▪ can relatives inject person?
▪ never omit insulin
▪ how to manage missed injections
▪ insulin dose adjustment
Insurance
▪ car insurance
▪ life insurance
Monitoring
▪ blood glucose/urinary glucose
▪ when to test
▪ recording results
▪ explanation of results
▪ goals to aim for
▪ urinary/blood ketone testing (if relevant)
▪ glycated haemoglobin
Oral hypoglycaemic agents
▪ when to take
▪ expected side-effects
▪ what to do if unwell
Podiatrist
▪ referred to podiatrist
▪ seen by podiatrist
▪ foot health education
Prescription exemption (not relevant if controlled by diet alone)
Sexual health
▪ contraception
▪ planned pregnancies and why
▪ impotence
▪ menopause
Smoking
▪ help to stop
Stress
Travel and holidays
▪ lying in
▪ adjusting therapy
What is diabetes?
What to do if unwell?
For education to be effective, it must be reinforced and the person motivated in self-management. This is the third stage in education. A multitude of evidence demonstrates that educational interventions work for a limited period of time only. Stressful periods (see Chapter 3) get in the way of the hard work that optimal self-management requires. Hence, education becomes a lifelong process and includes facilitating individuals in problem solving to manage new situations.
DEVELOPING EDUCATIONAL PROGRAMMES
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).
PEOPLE WITH TYPE 2 DIABETES
For most people, the diagnosis and management of type 2 diabetes starts in general practice. At the first visit after diagnosis, the person might well be bewildered and hence not very receptive to education. However, some ‘first aid’ measures are appropriate until the next appointment. These would include a simple explanation of diabetes, simple adjustments to diet following the taking of a dietary history and, for some, the commencement of monitoring might be appropriate (Box 11.1). The person should be advised regarding contact numbers should there be a problem.
Suggested staged approach to the education of the person with type 2 diabetes
First clinic visit
▪ answer person’s questions
▪ simple explanation of diabetes
▪ dietary history and some adjustments
▪ choice of monitoring and how to undertake it (if advocated)
▪ screening for complications, e.g. blood pressure, neuropathy, feet, eyes, proteinuria/microalbuminuria
▪ assess smoking status and offer cessation advice if necessary
▪ contact numbers
Second clinic visit
▪ answer person’s questions
▪ dietary reinforcement and encouragement
▪ assessment of monitoring, review results
▪ explanation as to what affects glucose levels
▪ simple explanation of benefits of good diabetic control
▪ foot health education
▪ prescription exemption (if relevant)
▪ Department of Social Security benefits (if relevant)
▪ driving
▪ related insurances
▪ carry identification that the person has diabetes
▪ Diabetes UK
Third clinic visit
▪ answer person’s questions
▪ dietary reinforcement and encouragement
▪ review monitoring and explain meaning of results
▪ explain the benefits of clinic attendance
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