Empowerment of people with diabetes
Arun K Baksi, Consultant Physician, St Mary’s Hospital NHS Trust, Isle of Wight, UK and
Sue Cradock, Nurse Specialist in Diabetes, Queen Alexandra Hospital, Portsmouth, UK
Introduction
The St Vincent Declaration (SVD), jointly made by the World Health Organisation (WHO) and the International Diabetes Federation (IDF) and endorsed by the European Governments, recognised the size of the problems due to diabetes (1). It set out two general goals for people with diabetes - that there should be a sustained improvement in health experience and a life approaching normal expectation in quality and quantity, and to promote prevention and cure of diabetes and its complications by intensifying research effort. The SVD action programme established five year targets to substantially reduce blindness, kidney failure, amputation, heart disease and also to improve the social position of people with diabetes in Europe. It was readily acknowledged that these targets would not be achieved without the active participation of the people who have this condition; this led to the relatively recent awareness of and interest in patient empowerment. There remains a great deal of confusion and apprehension surrounding this subject of empowerment.
WHO alluded to empowerment in its paper on health promotion as "the process of enabling people to increase control over, and to improve, their health (2). Funnell et al (3) stated that "patients are empowered when they have the knowledge, skills, attitudes and self-awareness necessary to influence their own behaviour and that of others in order to improve the quality of their lives". Diabetes is a life long condition and it is obvious that people with diabetes are enabled to look after themselves as much as possible. Imparting the knowledge for such a purpose is only part of the empowerment process; the manner in which it is delivered, noting the differing psycho-social attributes of each individual, is equally important. Knowledge about diabetes is not merely about promoting self management but includes an understanding of the healthcare system and how to utilise it when required. It is being increasingly recognised by healthcare providers and governments that the consumer must also be involved in decisions pertaining to the structure of healthcare systems. What is not at all clear is how to implement empowerment, who should be responsible for implementing the recommendations , and how and who should assess empowerment. This paper attempts to address some of these issues, noting, in particular, the recommendations on patient empowerment made at the Fourth Meeting for the implementation of SVD in Lisbon in 1997 (4).
Knowledge
Diabetes education of people with diabetes remains the corner stone in the management of this condition. Without the appropriate knowledge it will not be possible to establish self management. The SVD action programme (1) states that each clinical unit should have a written curriculum for all categories of patient and it should list the objectives to be achieved, methods applied, the staff responsible, the time and place of programme delivery and the method of evaluation. It emphasises that the curriculum should not only cover the initial treatment period but also describe how the education programme is to be reinforced and maintained in routine clinical practice. Empowerment dictates that a person with diabetes is made aware of these arrangements and by so doing the individual with diabetes is then able to ensure that appropriate care is being delivered.
Imparting knowledge
Whilst it is important to have a list of objectives and items of education, it must be remembered that flexibility in delivery of education is vital if success is to be assured. Most individuals who have recently been told that they have diabetes find themselves in a varying degree of psychological upset; they also draw upon their own personal observations and notions about diabetes which may prove to be important impediments in the acquisition and understanding of knowledge and skills. The consultation process should therefore allow the individual to express his or her anxieties and to influence the agenda of the education programme for that individual. Too much information given at any one session can be self defeating. The empowerment by education will be greatly enhanced by adding group teaching to which close relatives and carers should also be invited.
The consultation as part of an empowering education process
One of the key components of diabetes care is the ‘consultation’ traditionally viewed as the focus of assessment of the biomedical state of the individual’s diabetes. More recently it has been recognised that every interaction between a health professional and an individual with diabetes should have an educational opportunity - learning will always take place when two or more human beings start to interact through communication. The challenge for both health professionals and people with diabetes is to ensure that the consultation process is such that both parties gain something positive towards diabetes care from it.
The move towards an empowerment approach in diabetes care recognises reality as part of its philosophy! Three main "reality" principles underpin the empowerment approach:
1. whilst health professionals deliver a significant amount of diabetes care, estimates suggest that more than 98% of care is decided upon and delivered by the individual with diabetes and their carers,
2. that the mission of the healthcare team is to provide a system that gives opportunities for on-going expertise, education and psychological support that enables people with diabetes to make informed decisions about their daily diabetes self-care,
3. the recognition that adults are much more likely to make and maintain behavioural changes if those changes are made purposefully by the individuals themselves and result in changes within the individuals life that are meaningful to them (5).
It is also important to appreciate that POWER cannot be passed from one individual to another. To empower others is impossible. Our role is to assist them in the path of self discovery that allows the individuals themselves to recognise the power they already have.
Traditionally, consultations are led by the clinicians using the "acute/medical" model approach, which is characterised by the "technical expert" clinician seeking, by questioning and assessing the patient, to find the "problems" which then enables the clinician to provide a prescriptive model of care for the patient to follow.
Whilst it is important to recognise that this approach may be required in some circumstances (e.g. management of acute illness or during complications), there is evidence that it is limited when the outcome is intended to be a behavioural change in the patient (6).
Diabetes is a chronic disease that requires a different model of care, where the patient is recognised as the "content expert" of their lives and main decision maker, making the health professional the coach and/or consultant. This approach will require health professionals and people with diabetes to alter their traditional roles. An initial change could be focused on people with diabetes undertaking more questioning and being given greater influence over the process of consultation whilst the health care professionals adopt a more listening stance.
The above approach is being incorporated into diabetes care systems and its influence on the behaviour of health professionals and patients is being evaluated (7,8)
What care to receive and the healthcare system
The way diabetes care is delivered varies from country to country; the actual content of care will depend on a number of factors but availability of resources and money will be the main determinants. However, it should be possible to establish nationally agreed guidelines on minimal care that every person with diabetes should receive. People with diabetes should be informed of this.
As part of the consultation process each individual should be enabled to make informed choices on the type of therapy that is appropriate. The methodology applied during routine consultations should follow the principles already stated.
Delivery of diabetes care is through a multidisciplinary team and it is important to explain who is responsible for what. An explanation of the healthcare system will enable the individual to seek help from the appropriate person. This can be given either as printed material or as part of group education.
Each district should develop a resource centre which can provide information for people with diabetes and their carers.
A 24 hour help line will enable people to seek help readily and receive appropriate advice.
Quality of care
The standard of diabetes care being delivered by a particular centre should be made public to enable comparison with other units. The indicators for this exercise can be established at a national level; this should not be a difficult problem as there is already considerable international agreement on the subject.
Local newsletter
Most National Patient Associations regularly publish magazines for its members. However, at the Lisbon meeting and at other meetings with people with diabetes, a strong case was made for local newsletters for people with diabetes. Such a paper would contain educational articles, publish local news about the care providers, publish quality data and enable local people to express their views.
If the newsletters are largely meant for people with diabetes it is desirable that the editorial control remains primarily in the hands of the consumers. The difficulty in ensuring this is the ability to attract persons with appropriate interest and ability. The publication could well be supervised by local branches of the National Associations or alternatively, by local professional care groups ( vide infra).
Who will implement the recommendations and how is it to be monitored?
It is not a difficult task to make recommendations on empowerment but the exercise is valid only if they are implemented. Health care providers have a responsibility and a clear role in this matter but it would be unwise to leave the programme of implementation and evaluation entirely under the control of healthcare professionals. It can succeed only if there is a partnership between the providers and consumers. This requires a campaign of awareness; ideally, this can be conducted by patient organisations and their local branches.
The role of local care groups
There is much to be said for copying a system which has been successfully launched by the British Diabetic Association (9). Each district has a multidisciplinary committee ; all the provider care groups are represented as elected members but people with diabetes are also full members of the group. Such local groups do exercise enormous influence on health authorities and on the type of service required at the local level.
Whilst it is easy to seek elected members from the professions who usually have well established associations or groups, it is not the case for people with diabetes. The latter are rarely organised as a strong and cohesive group and it therefore makes it extremely difficult to seek elected members of people with diabetes to be represented on local care groups. But, despite this impediment, a concerted effort must be made to encourage people with diabetes to be involved in this field. This can be achieved as a result of a campaign by National Associations . Healthcare professionals should also encourage this as part of the consultation process.
Most people with diabetes do not entirely understand the various decision making processes in a healthcare system. Such persons require training if they are to function as truly equal members of a committee. The British Diabetic Association has shown that training programmes for persons with diabetes are very effective.
The role of National Patient Associations
This paper has addressed the issue of empowerment in the context of the individual person with diabetes. There is considerable prejudice and misunderstanding about diabetes in most societies. National Associations have a clear responsibility in promoting an awareness programme to ensure that diabetes care receives the appropriate attention of health authorities but also to minimise the discrimination that exist amongst employers and insurance agencies.
The recommendations made on empowerment should be seen by National Patient Associations as deserving a high priority in their activities. The development of active local branches should be encouraged and urgent consideration be given to the formation of local care groups in each district.
Such national bodies representing the interests of people with diabetes should urgently develop, in consultation with healthcare providers, a set of indicators to enable regular evaluation of the empowerment process in each district or unit providing diabetes care.
Does the Diabetes Industry have a role?
The interest of the diabetes industry in improving diabetes care is manifest in the numerous ways of its involvement. They make a significant contribution to the establishment and maintenance of National Patient Associations. The SVD Workshop on empowerment of people with diabetes is entirely supported by a consortium of industry. Individual companies are involved in supporting various projects in promoting empowerment in the consultation process.
Diabetes industry publishes a large quantum of educational literature for people with diabetes but there is considerable duplication of effort and perhaps a degree of wastage of a valuable resource. It would perhaps be more effective to have an agreed educational material which could then be incorporated within the promotional strategy of each company. Such a development should include consultation not just with healthcare professionals but also with people with diabetes; this is a challenge well worth exploring.
Whilst acknowledging the obvious and significant role of industry in diabetes care there is perhaps a case for examining a more overt role of industry in promoting educational meetings for people with diabetes, supporting newsletters and empowering activities at a local or regional level.
Conclusion
There is an understandable fear that allowing people with diabetes to learn about what care and education they should receive may give rise to an increasingly demanding population of patients. It cannot be denied that those units who have routinely practised empowerment have seen the emergence of well informed consumers who are aware of their rights. Such units have also noted the advantage of sharing the difficulties with their consumers. Frank and honest information about the lack of resources or other factors which impede the delivery of appropriate care will result in a better informed population who do have a significant effect on our health authorities and the political masters . Our patients are our best allies in our fight to deliver good care to all people with diabetes. Facilitating empowerment of patients and their families is well worth our time and energy; knowledge is power.
References:
1. Krans HMJ, Porta M and Keen H. Diabetes care and research in Europe: the St Vincent Declaration action programme Implementation document. World Health Organization 1992
2. World Health Organization. Health Promotion: WHO discussion document on the concepts and principles. Reprinted in: Journal of the Institute of Health Promotion 1985; 23 (1).
3. Funnell MM, Anderson RM, Arnold MS et al. Empowerment: An idea whose time has come in diabetes education. Diabetes Educator 1991; 17:37 - 41.
4. Staehr Johansen K, Home PD, Berger M et al. Improving Health of People with Diabetes: The "End of the Beginning". Diabetes, Nutrition & Metabolism 1997; 10: 13 -14.
5. Anderson RM, Funnell M, Arnold MS. Using the Empowerment Approach to help patients change behaviour. In Practical Psychology for Diabetes Clinicians eds. Anderson BJ & Rubin RR American Diabetes Association 1996.
6. Cerkoney KAB and Hart LK. The relationship between the health belief model and compliance of persons with diabetes. Diabetes Care 1980; 4: 656 - 657.
7. Anderson RM, Funnell MM, Barr PA et al. Learning to empower patients. Results of professional education program for diabetes educators. Diabetes Care 1991; 14: 584 - 590.
8. Anderson RM, Funnell MM, Butler PM et al. Patient empowerment Results of a randomised controlled trial. Diabetes Care 1995; 18:943 - 949.
9. Guidance on Local Diabetes Services Advisory Groups. British Diabetic Association 1995.