Chronic illnesses and self-management programs

Introduction

Once a person has a chronic disease such as asthma, cancer, diabetes, arthritis or a heart condition, their life and that of their families are changed, and it becomes extremely important for them to adopt new routines. These routines or behaviors support people in their daily activities or stabilize their conditions to prevent further detrimental effects. However, the effects of chronic illnesses are not only limited to patients and their families; they also impact society due to the use of resources to combat them and overload the healthcare sysetm . Therefore, a National Chronic Diseases Strategy (NCDS) has been implemented to prevent and care for chronic diseases in many countries around the world.

Key research questions to be answered in this paper include: Why is the healthcare system concerned about chronic illness? Why is most of this interest focused on the area of self-management? Is it the cost of implementation and management of chronic illnesses that makes self-management programs a priority? Although such innovation is a broad topic, the focus of this paper is limited to a review of the academic literature in the form of journals and textbooks on self-management. The paper aims to review of three self-managements programs from different countries as found in the literature with correlation to the best practice will be investigated. Some limitations of these programs will be highlighted before concluding the paper.   

Background

Before discussing any issues associated with self-management, it is important to have an overview of chronic illnesses and their effects. Chronic disease is becoming a serious concern as it is responsible for almost 60% to 73% of all deaths worldwide [2, 3]. Nevertheless, there has been a huge transition over the years in what can be done for physically sick people. The advances in the medical field enable more people to live longer; yet, many of them experience difficulties when they get old. Statistics have shown that 70% of patients who present to general practice are related to chronic diseases [5]. Therefore, chronic diseases put great pressure on health systems.

There are enormous effects of chronic diseases on patients, their families and the society they belong to. It is necessary to underline that patients are the ones who suffer the most from such diseases, which directly influences their health and may consistently deteriorate their physiological state or, what is more, even result in their death. Healthcare organizations are affected as well by a serious financial burden, especially if these organizations are public and have scarce financial resources.  Patients also suffer from serious financial losses as a result of chronic illness, particularly if their treatment is not covered by insurance.

In the past, healthcare professionals have attempted to minimize these effects in different ways. The U.S. government, for example, established the Physicians Assistants (PA) scheme in the 1960s, but this occurs mainly in the primary care setting [7]. In other countries, Nurse Practitioners (NP) have been created, which has increased that status of nurses and allowed them to take on procedures that were traditionally only performed by doctors [7]. Despite all these trials that have been made in the past to reduce the work overload for GPs in particular and healthcare systems in general, the incidence of chronic disease is still increasing. Therefore, a shift has occurred in order to cope with such huge numbers of patients. This transition was clearly identified and widely discussed in the literature; nonetheless, healthcare providers should realize that “most models of care used in the acute care setting are inappropriate for chronic illness and costly” [3]. Thus, it can be concluded that a universal agreement of self-care is essential for chronic illnesses [4, 8]. A definition of self-management will be provided in the following sections.

Self-management and its effectiveness

Self-management is about people being actively involved in their own care. Jordan [9] noted that a patient’s self-management is considered to be “central to the design of any care system”. This quote confirms that self-management needs to exist in any healthcare system, the details of which will be considered and discussed later on. Chronic disease self-management (CDSM) programs have been found to be effective in improving clinical, behavioural, and self-efficacy outcomes associated with a range of chronic illnesses, and evidence suggests that CDSM is also effective in reducing healthcare costs and health service utilisation [10]. Self-management education programs are significant for helping patients learn new skills in order to enhance the self-care of their conditions [11]. The concept behind self-management as mentioned previously is self-efficacy. It is well known that chronically ill people may have different symptoms, such as lack of energy, sleep difficulty and loss of appetite. Therefore, managing these symptoms is extremely important. In coping with such diseases, healthcare providers must empower patients and let patients them be positively involved in addressing not only their physical well-being, but also their emotional struggles.

Types of self-management programs

Self-management programs assist people in finding strategies to deal with their illness with the support of health professionals. Most programs are run in groups so that people with chronic illnesses are able to share their experiences and learn from each other. Moreover, self-management is about taking an active role in managing any long-term health condition in partnership with health professionals, family and friends. Two main noteworthy types of self-managements programs are the Wagner model, which emphasizes service integration, and the American Stanford model based on Lorig’s work, which emphasizes the patient’s journey. Both models have emerged from the U.S. hospital-based experience with minimal development of the family doctor’s role [12,].

The Flinders model

Malcolm Battersby, the senior lecturer in psychiatry at Flinders University, Australia, has worked extensively with general practitioners and other healthcare professionals to develop what is known as the Flinders model, which consists of generic assessment and care for chronically ill people [14]. The model is a patient-centered care model for the management of chronic illness where the patient is the decision maker, while the caregiver is an advisor. This approach can be applied to a variety of chronic conditions and has six basic principles of self-management where the patient: 1) has knowledge of the condition, 2) follows a care plan agreed on by the healthcare providers, 3) actively shares in the decision making, 4) monitors signs and symptoms of the condition, 5) manages the impact of the condition on physical, emotional, and social life, and 6) adapts a lifestyle that promotes health [15].

The philosophy underpinning the Flinders model was based on the cognitive behavioural theory of Bandura [16]. It comprises a clinical assessment of self-management with goal setting which results in a 12-month care plan agreed on by the patient. In the Flinders model, the healthcare providers and the patient work together in sharing decisions and taking responsibility. This differs from the Stanford model (discussed below) which can be delivered without the use of healthcare professionals. 

The Stanford model

The American Stanford model is based on the work of Halstead Holmen and Kate Lorig at Stanford University, who in 1979 started by teaching arthritis patients about self-care through using lay tutors [17]. Many countries around the world including Australia and the U.K. have adapted this program, because it delivers cost-effective and successful results. The Stanford model contains six sessions led by a trained pair of lay peer leaders and is based on the self-efficacy theory, mainly with regards to setting goals, obtaining feedback, changing lifestyles, coping, controlling anger, problem solving, managing pain depression, and improving communication with friends, family and healthcare providers [18]. Nordner and Ahlberg [19] conducted a study on the importance of group therapy for patients with chronic illness and found that it helped them to “share experiences and emotions, exchanging informational support, and exchanging of emotional support”. Consequently, such therapy enables people to work in a group setting, to understand the components of self-management, and to learn skills and strategies that will help to enhance their ability to manage their lives. 

The Expert patient model

In 1999, the British national health system adopted the Expert Patient Programme (EPP), which is a lay-led self-care support workshop for people with various long-term conditions based on the Chronic Disease Self-Management Programme (CDSMP) [20]. The EPP is particularly cost-effective as it is carried out by volunteer personnel. Therefore, the U.K. Department of Health set up a specialized team to develop the EPP to be applied within the U.K. over the next few years [8]. The EPP is a 6-week small-group program attended by people with different chronic illnesses, with the sessions lasting 2.5 hours. The participants self-define their chronic conditions based on an underpinning of empowerment. The setting of weekly goals and action plans are essential for the success of the course. A randomised control trial by Richardson, et al. [21] found that the EPP could reduce the cost by ￡27 per patient. If the goals are successfully achieved, it is subsequently more likely to enhance confidence and assist the participants in achieving more health-related behaviour changes [8].

Limitations

Some drawbacks of the abovementioned models are found in the following three categories: 1) the healthcare system and provider, 2) the patients, and 3) the disease. Firstly, the nature of the Australian primary healthcare system and its services are very complicated, as they combine both State and Commonwealth responsibilities with public and private providers [13], and some GPs have insufficient information of the self-management programs concerning each chronic condition [12]. As for the patients, some pass through a denial stage when first diagnosed with a chronic disease, which may affect their engagement and invlovment with such programs through a lack of awarness because of their denial [22]. This can be seen, for example, with patients who are mentally retarded or have dementia. Conversely, when dealing with paediatric patients, nurses may have different and more difficult experiences. For instance, children’s perceptions and understanding of hospitals, illness and treatment are different from those of the adults [23]. Unlike adults who have already developed self-discipline and a grasp of illnesses and treatments, children’s emotional and psychological capabilities as well as their behaviours are not yet fully developed for them to understand clearly the intervention processes associated with hospital care, hence affecting their engagement in self-management. Finally, some specific types of chronic diseases need to be treated in acute contexts, such as quadriplegic patients who need to be connected and monitored, not only in an acute context, but in an intensive care unit as well.

Conclusion 

Chronic diseases have become a serious concern for modern healthcare systems. The numbers of chronically ill people are increasing; therefore, a transition in care is taking place, particularly in the area of self-management. The paper has discussed three self-management programs established to date in order to prevent and care for the chronic sufferers of disease. An evaluation of these three programs has been highlighted; the Flinders model seems to be more dependable and effective, as it relies on healthcare providers, unlike the Stanford model or the Expert Patient Programme, which are run and carried out by lay personnel. Added to that, some limitations have been presented, namely physicians having insufficient information, patient denial, and children or people with dementia having difficulties in following the current programs.

References

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