Type 1 and Type 2 diabetes can lead to acute and chronic complications compromising health and quality of life. However outcomes can be improved with careful self-management and maintaining ‘good control’, i.e. control of blood glucose levels, lipids, blood pressure and body weight, through following a healthy diet, physical activity, moderating alcohol intake and stopping smoking. The value of patient education is evident from research demonstrating that patients who never received diabetes education showed a striking four-fold increased risk of a major complication1.
Self-management is key to good diabetes care and patient education should be at the heart of any service. Standard 3 in the English diabetes service framework standards document refers to empowering people with diabetes 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’2. This is achieved by the provision of information, education and psychological support. Standard 3 goes on to reaffirm that ‘people with diabetes need the knowledge, skills and motivation to assess their risks, to understand what they will gain from changing their behaviour or lifestyle and to act on that understanding by engaging in appropriate behaviours’. Patient education, information and involvement are also priorities set out in the other national diabetes frameworks and health plans3-5.
Patient education should be a planned life-long process, starting from the point of diagnosis and remaining as an essential component of diabetes care.
For both Type 1 and Type 2 diabetes the aim of patient education should be to optimise:
- Knowledge of diabetes and the aims of its management and the prevention of complications7.
- Motivation and attitudes to self-care – potential barriers to self-care need to be assessed and addressed.
- Ability to define and agree personal health-care targets and develops strategies for meeting them.
- Behaviours, which interact with diabetes management.
- Empowerment in self-management and communicating with the professional members of the healthcare team effectively.
At and shortly after diagnosis, basic facts are necessary for the initial management of diabetes and patient education should provide the minimum instruction to obtain control over the new situation and basic supportive information on:
- The nature, symptoms and outcomes of diabetes and risks associated with the condition7
- Identifying and addressing fears, anxieties and preconceived ideas of diabetes and answering questions7.
- Healthy eating.
- Physical activity.
- Initiating treatment whether tablets or insulin – with insulin, guidance with self-injecting.
- Awareness of acute complications such as hypoglycaemia and to deal with them.
- Confidence building for self-management7.
- Everyday life issues, such as identification, prescription exemption, employment, driving, school, insurance, as appropriate, including providing other contacts for further advice.
- Services for people with diabetes locally, including contact telephone numbers7.
In the months following diagnosis, continuing education will expand on these topics covered initially and in addition will cover elements essential to living with diabetes such as:
- Ensuring optimal and appropriate use of therapy, whether tablets or insulin.
- Managing effectively nutrition and physical activity.
- Being able to detect and manage acute complications of therapy such as hypoglycaemia.
- Being aware of late complications preventing, detecting and treating them, and of the need for regular assessment.
- Being able to monitor, record and act appropriately on the results of therapy.
- Making appropriate responses to unpredicted and new problems.
- Dealing with special situations, eg. Travelling, illness.
- Making appropriate lifestyle changes (eg. smoking, alcohol, drugs) and dealing adequately with stress.
- Dealing with psychological aspects of living with diabetes.
- Being aware of pre-conception care and implications of pregnancy.
- Accessing healthcare professionals when needed.
Family members, partners and carers should be included in the education process as appropriate. A more detailed list of topics can be found in Appendix 1. The nature and level of information, as well as the timing of when provided, will ultimately be determined by the assessed needs of the individual and the format of the educational intervention.
People with diabetes need comprehensive, continuing education, which is reinforced periodically and includes skills and knowledge to enable lifestyle adaptations.
Planning of patient education needs to take into consideration the learning processes and variable needs during the different life stages of the person with diabetes:
- There is a need to access information and support in a gradual and ongoing way, as the course of the condition evolves and life circumstances change, people tend to look for and need more information about diabetes and how to cope with it, and there are practical and emotional limitations of how much can be assimilated at once.
- The learning process involves interaction and exchange and is not a case of people simply receiving instructions and information and acting upon it.
- Both practical and emotional support is needed to get through initial phases of both learning and how to do things and learning to cope with having to do these things. Patients have to emotionally accept the diagnosis of diabetes and also face the fact that they may already have potentially debilitating complications. Fear and denial are common and will have implications for how the individual/care copes with the condition. Emotional support is important in enabling effective self-management and improved outcomes in diabetes.
Whilst medical treatments are important, long-term outcomes are also influenced by choices that people with diabetes make about diet, physical activity and other health-related behaviours. These choices will in part reflect knowledge about their condition and their ability to monitor it.
It is therefore necessary for patient education to incorporate both:
- Information giving/awareness rising, mainly to enable initial management of diabetes, but should also be on going to meet the variable needs of the individual and match life events.
- Supporting behavior change and self-care skills to ensure better outcomes in the long-term.
Maintaining behaviour change is essential in achieving positive longer-term benefit13-15 and this is a challenging area, which requires the use of appropriate skills, such as adult learning skills and a range of psychosocial methods. Interventions using enhanced methods including visual aids, behavioural learning and patient-centred techniques (eg patient participation) produce larger effects than those using didactic methods14. Acknowledging people’s feelings and concerns and helping them to set achievable goals are achieved by using a patient-centred approach and motivating behavioural change.
Facilitating self-management involves helping individuals to find their own best combination of behaviours. It is suggested that educator skills and training should include motivation methods, psychology, peer review and working with groups.
No single educational strategy has been demonstrated to be the best for people with diabetes. Patient education can be delivered on a one-to-one basis or in a group, and there are also innovative techniques involving distance learning or multimedia packages. The appropriate format should be determined by patient’s needs and choices. Group learning is, however, popular in terms of cost-effectiveness and convenience for patients and providers of patient education and its advantages include: improving relationships between patients and healthcare professionals and allowing peer interaction. It also allows the benefits of sharing experiences and social learning for people with diabetes.
Regardless of the format, educational interventions which have achieved best outcomes, both clinical and quality of life, are ones which:
- Incorporate behavioural models and adult education principles, to facilitate improving self-care behaviour – mainly, dietary behaviour, exercise, blood glucose monitoring, foot care, by teaching self-care skills. Long-term prospective studies have shown that diabetes self-management education is effective only when behaviour change strategies are extensively used, and studies using only didactic methods have not shown any positive results. Educational efforts that have employed a pragmatic approach by teaching self-care skills have shown to improve metabolic control by improving self-care behaviour. This could for example include interactive instruction on blood glucose monitoring training, blood glucose pattern recognition and control, or problem solving for high or low blood glucose, sick days and meal planning.
- Recognise that an important component of the process is the patient’s personal and unique experience of living with diabetes.
- Have a patient-centred style to allow patient needs and views to be acknowledged and addressed and allow patients to develop the capacity to observe them, make sensible judgments, feel confident (self-efficacy), and recognize desirable outcomes.
- Take into account the social, emotional, cultural and psychological aspects of a person’s life to help him/her adjust to their condition, eg consider individual’s beliefs regarding health, illness and diabetes, potential barriers to self-care, coping skills, and his or her social environment– achieved through patient empowerment.
In the area of patient education, empowerment means the structuring of individual consultations and group meetings in a way that helps the patient to discover and develop his/her own resources for change and control. This is achieved though self-awareness and clarity over one’s own values, needs and goals regarding diabetes care. The concept of eempowerment figures strongly in current NHS plans and the diabetes service frameworks. It has been established that:
- People with diabetes need to be partners in the decision making about their care.
- People with diabetes should receive information to live their chosen lifestyle.
- Patient expertise should be recognised by healthcare professionals.
- Include personalised goal setting. It is important to find out what is acceptable and realistic within the context of the patient’s life.
- Include social learning variables, eg problem-solving skills and self-efficacy. These are elements of the adult learning model, which supports self-management and control.
- Where the healthcare professional and patient work as partners, developing strategies that give the patient the best chance to control his or her own condition and reduce the physical, psychological, social and economic consequences of a chronic condition. Educational interventions that involved patient collaboration may be more effective than didactic interventions in improving glycaemia control, weight, and lipid profiles. Within this partnership, patients provide individualised information about their condition and the health professional provides the general information. Both are necessary for effective management.
There are special considerations for planning patient education for certain groups such as children, adolescents, older people, and weight management and for black and minority ethnic groups:
- There needs to be opportunities for parents to learn about diabetes both to look after their child with diabetes and because adjustments affect them too. A recent study found that diet, the need for routine and rigidity, and the unexpected and unexplained fluctuations in blood glucose levels were the most difficult aspects of diabetes for families to deal with. Parents have expressed the need to learn about diabetes in different practical situations with the appropriate ongoing professional support so that they can feel confident and able to cope34.
- The point at which children become interested in learning about their diabetes is often between the age of ten and early teens. They need to learn about and develop skills in injections and monitoring. There is also a need for them to adapt diabetes to school programmers, school meals, exercise and sport. A survey found that appropriate information however is not available, especially information that doesn’t frighten them about the possible implications of the condition in later life11.
- Communication skills, problem-solving and family support resulted in better long-term metabolic control and self-care in children.
- Teenagers tend to become rebellious and begin to resent having to adhere to their self-care regimen. Diabetes is often viewed as a threat to physical, psychological and social well being which disrupted the balance of life and health professionals view adolescence as a difficult time in which to manage diabetes.
- Need for open, non-judgmental information about living with diabetes.
- Information about minimizing harm from experimenting with smoking or drugs.
- Look out for the development of unhealthy eating attitudes in adolescent girls and excessive alcohol intake in adolescent boys.
- Self-management problems typically occur approximately 3.5 years post-diagnosis or during early adolescence, and once problems are established they become difficult to rectify. Thus for children and adolescents with Type 1 diabetes the period immediately post-diagnosis is the optimal time for interventions to encourage future self-management.
- Deterioration in glycaemia control frequently occurs.
- Declining parental involvement in the management of diabetes has been seen as a possible factor associated with the decline in control observed in adolescents.
- Peer support is valuable in overcoming problems with diabetes management.
- Many feel the aim of maintaining blood glucose as close to normal as possible is too high and unachievable; thus the aim may reduce motivation. Therefore adolescents need to be involved in the goal-setting process right from the beginning of their treatment even if this means that initially goals are set at lower than normative levels.
- Their needs, personal priorities, and social roles (eg student, family member, peer member) need to be recognized in their care.
- Technical skills training have shown to improve independence in insulin administration and blood glucose monitoring.
- Interventions incorporating group coping skills training (which includes conflict resolution and bargaining techniques), may help teens in improving metabolic control, self-care behaviour and overall quality of life.
- 60 per cent of people with Type 2 diabetes in the UK are over 60.
- Similar educational strategies apply to older adults with diabetes however consideration needs to be given to the fact that they tend to have higher rates of:
- Chronic illnesses.
- Impairment and disability.
- Lower self-rated physical health.
- And higher levels of depression than older adults without diabetes.
- Their level of diabetes knowledge tends to be poorer.
- Communicating with elderly may be hampered by poor vision, poor hearing, cognitive impairment so there is a need to tailor information.
- Needs of older people who are housebound or in residential care should be considered.
- Giving small bits of information over a period of time would be more effective than teaching everything all at once, within a short time.
- Handouts with large print are also useful teaching tools.
- Visual demonstration of devices etc works far better than any oral explanation.
- Education should be carried out in an appropriate environment involving the carers who may need to supervise medication, meals and monitoring. They need to know how to recognize and treat hypos and need to know about foot care and footwear.
- Evidence that they can improve in self-care and make lifestyle changes if provided with support and if the programmed is focused on problem-solving and social learning.
- Support groups can help in maintaining knowledge gained from education sessions in older people with diabetes and in ensuring a better quality of life. The support groups were self-directed by patients and supervised by a social worker. They were run monthly and included coping skills, group discussions, and structured social activities.
Over 80 per cent of people with Type 2 diabetes are overweight.
Weight loss interventions through diet and exercise help people with Type 2 diabetes control their blood glucose, blood pressure, and blood lipids in the short term.
Main issues identified in studies are:
– Sustained weight loss is difficult to achieve.
– Dietary education based on behavioural therapies such as counselling and behavioural modification is found to produce the best maintenance in weight loss49.
– Obesity programmes need to be of long duration – treating obesity as a chronic condition.
Diet and exercise programmes may result in improvements in metabolic control even with only a small degree of weight loss.
Black and minority ethnic groups are at a higher risk of having diabetes and need to access culturally competent information and education on diabetes.
The main issues identified for these groups are:
- Knowledge of diabetes, its risk factors and consequences, blood glucose control and quality of life tend to be poorer in ethnic community minorities. There is a significant difference in diabetes knowledge related to ethnicity, being less in Asians and African-Caribbean’s compared to Caucasians, according to a survey done in Birmingham.
- There are many cultural variations in attitudes to ill health and disease as well as to healthy diet and lifestyles. Lifestyle is also influenced by social structures such as poverty.
- Greater involvement of people from black and minority ethnic groups can ensure an increased awareness of health issues, with communities setting their own agenda and with appropriate targeted resources and training given to healthcare professionals to participate in community-based programmes to ensure cultural competence.
- Community health workers or link workers can be a useful tool in bridging language and cultural gaps between healthcare professionals and different communities. Group education sessions can be set up in a familiar venue, for example a community hall, a place of worship or a local school. They can help in the translation of publicity materials and interpreting during educational sessions.
- There is a wide variation in literacy rates according to age, sex, and ethnic origin.
- Language, dietary practices, alternative remedies and religious practices have to be taken into account and appropriate educational material is needed.
Patient education should be integrated into regular clinical diabetes care and should incorporate the following process:
Both an initial should shape diabetes education and an ongoing needs assessment of the patient55, 56
The assessment process has to be appropriate to the individual(s) with diabetes and can include one or more of the following strategies:
- Confidential assessment of physical, psychosocial, spiritual, cultural and socioeconomic needs as required.
- Focus groups.
- Needs survey of community.
A learning plan needs to be developed as part of the care plan with the participative involvement of the patient to incorporate his/her learning objectives and set out achievable and realistic short-term and long-term goals57. This is achieved through:
- Collaborative goal setting.
- Processes appropriate to the culture of the individual with diabetes or the community.
- A clear and full explanation of options and choices available to the individual with diabetes.
- The team members respect the individual with diabetes making decisions that, even if they do not agree with the decision.
- Identification of resources needed to support healthy living with diabetes.
An effective education plan reflects an effective integration of:
- Current principles and practices for diabetes care and education.
- Flexibility in approaches to teaching and learning.
- Physical, psychosocial, cultural and socioeconomic issues related to the person or community that impact on diabetes care.
Evaluation – Measuring effects of educational interventions
‘Evaluation’ refers to the collection and analysis of data on groups of patients to describe and improve programmed functioning, whereas ‘assessment’ involves an analysis of individual patients to customize treatment to meet individual needs.
The effectiveness and quality of diabetes education should be evaluated regularly by well-designed audit projects or research studies assessing outcomes that the intervention explicitly targets for change. Services would then have to be revised as needed in order to ensure the quality control of any educational intervention. Interventions would have to show favorable effects on both metabolic and behavioral control to be deemed as cost-effective.
Processes/methods should be in place from the beginning of the intervention to get feedback between the patient and the team providing the education regarding the individual’s progress towards the achievement of identified learning goals. Evaluation can be performed on first contact, as part of routine care visits, by direct enquiry and as part of annual review.
It is important to evaluate the effect of educational interventions over a long follow-up period of a minimum of one year in order to ascertain whether initial improvements, if any, are sustained in the long-term.
Outcomes, which could be evaluated:
- Biomedical measures. This is demonstrated when the following indicators are maintained within, or progress towards, the individual’s goal range:
- Blood glucose.
- Glycated hemoglobin.
- Serum lipids.
- Weight indicator.
- Blood pressure.
- Diabetes self-care skills, eg self-monitoring, insulin injections.
- Behavioral, psychosocial and quality of life outcomes – Individuals with diabetes reporting or demonstrating increased ability to accomplish goals for healthy living with diabetes that are important or meaningful to them as in:
- Identifying ways or taking action to alter physiological processes, personal behavior and/or social conditions that impede there desired quality of life.
- Perceptions to barriers to self-care and lifestyle changes and increased personal control with regard to living with diabetes.
- Emotional adjustment.
- Satisfaction with diabetes care.
- Integration of diabetes self-care into their work, family, personal needs and interests.
- Their desired quality of life. Validated quality of life measures should be used.
- Number of episodes of hyperglycemia and hypoglycemia.
- Diabetes-related absence from school/work.
- Emergency visits and/or hospital admissions for reasons directly related to diabetes mellitus.
A number of validated evaluation instruments have been developed to measure knowledge, diabetes-related attitudes, feelings, functional status, quality of life, psychosocial self-efficacy etc.
Patients and healthcare professionals need to have access to adequate information resources that are:
- Accurate and consistent.
- In the appropriate format:
– Diversity in preferences for information presentation needs to be recognized.
– The education material has to be available in the appropriate language and needs to be acceptable in cultural terms.
– Information should be in a suitable format to meet any cognitive or physical impairment needs.
Self-management plan: it would be ideal if an individualised plan can be prepared and filled in by both patient and ‘educator’ at different stages and it can be kept with the person’s diabetes health-care record file. The English NSF Standard 3 calls for personal care plans to help empower people with diabetes and patient held/accessed records to facilitate self-care.
- Resources to assist in assessing and achieving metabolic control are available.
- Physical space conducive to learning and based on individual/community needs, e.g. dedicated education space.
- Appropriate instructional equipment and information systems, e.g. office supplies and equipment; record-keeping system; access to computer hardware. There are new technologies in patient education such as use of the Internet, computer-assisted learning and video-based information systems which can be resorted to as educational tools, resources-allowing, to tailor information to needs of different groups of patients and might facilitate timely access to information.
People with diabetes are a valuable education resource and can offer support to other people with diabetes, through processes such as peer counseling, support groups and camps. Group meetings can help people to overcome feelings of isolation and bring relief to some by providing the opportunity for people to talk to others with similar experiences and share knowledge.
Follow-up contact – e.g. take-home material, brief follow-up calls, support groups or regular follow-up visits, will be critical to maintaining the success of any educational intervention. Obviously this will depend on adequate staffing and sufficient time assigned for education services.
Staffing and skills – educational interventions require dedicated time, specific training, teaching and communication skills, a supportive attitude, and a readiness to listen and negotiate.
- Every member of the healthcare team is involved in patient education and healthcare professionals might need to acquire the appropriate skills to work with patients on developing strategies for overcoming both physical and psychosocial barriers, e.g. counseling, communication and group facilitation skills7.
- Improving standards of patient education requires a change from a directive approach in favor of eliciting the individual’s thoughts and feelings, and this could be achieved by developing:
– A professional training programme which promotes evidence-based practice, adult learning methods and an understanding of the patient education framework; and
– A professional resource pack with guidelines to ensure consistent practice.