The life of someone with a chronic medical condition is changed in many ways that a healthy individual cannot understand. There is remarkable impact to the social, recreational and occupational functioning of someone with chronic illness. Relationships are also often compromised and strained as the effects on the family can be as great, but different, than that of the person who is affected. The emotional toll on someone with the challenges of an ongoing illness can be overwhelming. Mood-related symptoms, anxiety, depression, anger, irritability, helplessness and hopelessness are emotions that all those with chronic illness will probably experience.
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One of the most common chronic illnesses is Diabetes Mellitus. Diabetes Mellitus is a group of metabolic diseases characterised by high levels of glucose in the blood. This is also known as hyperglycaemia. This results from defects in insulin secretion, insulin action or both. (American Diabetes Association (ADA), Expert Committee on the Diagnosis and Classification of Diabetes Mellitus, 2003). There are several types of diabetes mellitus; they may differ in cause, clinical cause and treatment. The main classifications of diabetes are: Type 1 and Type 2 Diabetes, Gestational diabetes mellitus and Diabetes mellitus associated with other conditions or syndromes.
This report is focused on Type 1 diabetes. The number of new cases of childhood-onset type 1 diabetes mellitus has increased significantly in recent years, particularly in younger children (Alderson et al. 2006). Type 1 diabetic patients are usually diagnosed before thirty years of age (CDC, Diabetes Surveillance, 1999) and in fact an alternative name is Juvenile diabetes. Approximately 5% to 10% of people with diabetes have Type 1 diabetes, in which the insulin-producing pancreatic beta cells are destroyed by the auto immune process. Consequently they produce little or no insulin and therefore require insulin injections to control their blood glucose levels. The clinical manifestations of type 1 diabetes are immense. These include rapid weight loss, thirst and hunger, frequent urination, lethargy and maybe even diabetic ketoacidosis (DKA) Smeltzer, S.C, (2004). If this chronic illness is not managed properly it can result in terrible consequences. These may include loss of eyesight and limbs, coma or even death. All of these complications can affect the person’s personal, social, and work life. When diabetes is managed properly, complications like retinopathy, nephropathy, and neuropathy can be prevented (Hernandez & Williamson, 2004).
This chronic disease has a huge impact on both the patient and the whole family. Parents are continuously concerned about their child’s transition through adolescence and often consider this as a stressful period in their life. When individuals are still very young, and thus, depending on their parents or carers there will be a sense of attachment between the two. This situation creates further anxiousness since parents act in different roles simultaneously, the role of a mother or father and the one who pricks her child everyday to check blood glucose levels and administer insulin therapy by injections.
Much of the spontaneity of everyday life disappears in a routine of set-meals, blood tests, injections and attention in trying to keep blood glucose levels within a target range. According to Silink (2002) diabetes never takes a holiday. There is no disease in medicine in which parents are asked to make so many daily decisions about a life-saving treatment such as administering of insulin which, in the wrong dose, could cause harm to their child.
There is evidence that a grieving period is experienced not only by the child but also by the parents following the loss of their child’s health and sometimes parents even blame themselves for their child’s disease . At times parents feel helpless in front of the disease and unable to provide the necessary diabetes care for their child. Affected children try to live ‘normal’ and want to be seen and treated as no-diabetics, even though they know that to cope with their illness, there are things that they have to do that their friends can do without. This situation has a significant impact on the individuals involved and it can lead to loss of confidence and social isolation.
Persons having chronic illness are in a constant state of grieving aspects of themselves that they may not get back. According to Stanton, A.L. et. al (1994), coping with the effects of the chronic illness requires a constant reorganizing and redefinition of self based on the changed reality imposed by the illness. The emotions elicited by chronic illness resemble the five stages described by Elisabeth Kubler Ross (1969) as stages of grief. The five stages are Denial, Anger, Depression, Bargaining and Acceptance. In fact, the individuals feel sad over their lost health and all the ramifications of that loss. Kübler-Ross originally applied these stages to people suffering from terminal illness, later to any form of disastrous personal loss such as employment. This may also include important life events such as the death of a family member, divorce, drug addiction, the onset of a disease or chronic illness or others. Kübler-Ross claimed these steps do not come in the order noted above, nor are all steps experienced by all patients, though she stated that a person will always experience at least two.
It is a fact that no one can ever be prepared for the despair and disruption that a chronic illness bring about. For some individuals, it creates an inner struggle around beliefs and faith. The person may feel abandoned, angry and confused and start asking the “why” questions. For other people, turning to spiritual practice, meditation or prayer can offer comfort.
One theoretical model that has dealt with how cognitive factors influence illness coping behaviours and its outcomes is the ‘Common Sense’ Model (CSM) of illness representations proposed by Leventhal, Meyer and Nerenz (1980) (Leventhal et al.,1984). The common-sense model of self-regulation of health and illness was developed in the 1980s by Howard Leventhal and his colleagues (Diefenbach & Leventhal, 1996). The theory has various titles such as the, Self Regulation Theory, Common Sense Model of Illness Representation or Leventhal’s Theory (Hale et al, 2007).
The key construct within the Common Sense Model is the idea of illness representations or ‘lay’ beliefs about illness. These representations integrate with existing guidelines that people hold, enabling them to make sense of their symptoms and guide any coping actions. Leventhal et al (1997) describe five components of these illness representations:
The first component is identity. This is the label or name given to the condition and the symptoms that ‘appear’ to go with it, in this case Type 1 diabetes. When a person is diagnosed with a chronic illness, he experiences a health threat in his life. Type1 diabetes presents itself with different symptoms and these are both experienced as body symptoms and also at an abstract cognitive level. Information about diabetes is provided to the individuals in order to have a clear picture of their disease. Hence the more illness coherence the individual has, the more they are capable to deal with it and create their personal model (Hampson, S.E, 1990). For example, a patient in the study of Huston, S.A & Houk, C.P. (2011) who was an adolescent with well-controlled disease, noted that “T1D is hereditary … [text omitted] …. It’s when your body attacks your pancreas and it stops producing insulin. You have to give yourself insulin to make your blood sugar level.” In contrast, patient 10, an adolescent with poorly controlled disease, reported that “diabetes type 1 is … ah, actually I really can’t explain it.”
Time line is another domain of the Common Sense Model, this represents the duration of the illness which can be chronic, acute or cyclical. These beliefs will be re-evaluated as time progresses, and it has been suggested that ‘Inside every chronic patient is an acute patient wondering what happened’ (Brown, F.M., 2002).
The vast majority of patients understand their condition as a lifelong one, although sometimes the hope for a cure is mentioned. A few conflate cure with disease improvement or needing fewer treatments. Several timeline models have been put forward to depict the outcome of the interplay between the genetic and environmental factors. Chatenoud, L., & Bluestone, J.A., 2007 argue that disease progression in T1D is not a linear process, but rather proceeds at variable pace in individual patients. For example in the study of Huston, S.A & Houk, C.P (2011) a patient with good control of T1D, stated “there’s a honeymoon stage where you don’t have it, like-it could go up from, like 2 days to a month, but … I haven’t gone through that yet,” and “I think it can-it can go away.”
Personal control can also suffer an impact and since diabetes is a chronic disease there is the risk of poor adaption and lack of control. It is comprehensible that at this age children are difficult to control and can struggle with metabolic management at times.
These representations will be based on information gathered from personal experience as well as the opinions and discourses of significant others, health professionals and media sources, reflecting issues such as stress, environmental pollution and other pathogens. Although Diabetic patients try to adhere to treatment and diet, they are also likely to cheat. Some of the patients sometimes are glad that their glucose level is low. They feel so not because of the good result but in order to take the opportunity and eat something sugary so that they have a decent blood glucose level.
Treatment control represents the perception that following one’s treatment is beneficial.. Managing this chronic illness is challenging. Parents of type 1 diabetic patients have to be strict in order that their children are compliant and empowered to control this disease. Although diabetic patients especially adults tend to be very compliant, those who still have high blood glucose results are then put back. They argue that although they are adherent and sacrifice themselves they still do not have the desired outcome.
Consequences and emotional representations: the individual beliefs about the consequences of the condition and how this will impact on them physically, psychologically, financially and socially. These representations may only develop into more realistic beliefs over time. Some sort of consequences always exists when having a chronic illness. For example individuals who are diabetics are sometimes ashamed of telling their friends about their condition. Instead they make up excuses that they do not like sweets or they still get some and then they end up with hyperglycaemia. This shows that the individuals have not yet accepted their disease and are still denying the reality. Self-care activities are seen as a consequence by all diabetics, with specific activities varying by disease and age. Diabetic people describe their disease as serious or very serious, with death most frequently mentioned as the worst that could happen, followed by coma, eye sight problems, wounds or amputations related to Diabetes and hospitalization. Apart from all these some of the patients are always hiding that they have diabetes as for them it is a great loss in health which is eventually embarrassing.
Financial problems and employment complications can be present as well (Marmot, M., & Madge, N., 1987). This is probable due to a diminished level of independence which will effect mobility and reduce the working capacity in the advanced stage of the disease. Moreover, children will also fail to attend school due to frequent hospital visits or admissions, and perhaps sickness from secondary diseases caused by diabetes.
Another model is the trajectory model which is a nursing model that mostly considers the situation of individuals with chronic diseases. It has been introduced by Juliet Corbin, a nurse and nursing scientist, and by the sociologist Anselm Strauss. This is also known as the “Corbin-Strauss-Model” and is recognised as a middlerange explanatory nursing theory (Corbin & Straus, 1991).
This model focuses on the concerned person having the chronic illness who requires support of the health care system during the process of coping with the illness. In terms of the Trajectory Model (TM), a faithful building of a relation between the caring nursing person and the patient should be affected.
McCorkle & Pasacreta, (2001) explains eight phases of chronic illness trajectory. The first phase is the Initial or pretrajectory phase, this takes place prior signs and symptoms are present whilst the Trajectory onset phase is when there are the first signs and symptoms and diagnosis takes place. The third phase is the crisis phase which takes place when serious situations occur. The acute phase is the stage where the symptoms are normally controlled by a prescribed regimen. The following phase – stable phase is when the symptoms are under control and managed well. On the other hand the unstable phase takes place if the symptoms are not controlled with the prescribed management. The downward phase arises when there is development of mental and physical deterioration and the dying phase is the period before death approaches.
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This report provides recommendations to improve both the chronically ill individual and his relatives’ quality of life. The goal of these recommendations is to improve the health and hence become more compliant and adherent to treatment. However before blaming a person who is not very compliant, the health care team should assess the individual for any underlying problems which the patient might be facing.
Recommendations
Treatment adherence difficulties are common in individuals with diabetes, making glycaemic control difficult to attain. Since the risk of complications of diabetes can be reduced by proper adherence, patients who are not compliant should try and cope with some ideal recommendations for diabetes management. The concepts of compliance and adherence to treatment should be discussed and advices for improving adherence should be offered by adopting a more collaborative model of care emphasizing patient autonomy and choice.
Ideally, prioritization and a realistic goal setting programme are discussed with both the patient and his carer to facilitate the implementation of self-management care. These targets should be selected on their importance, patient and carer motivation to succeed and the promptness of self-care. Bodenheimer et al. (2002) argues that ‘selecting the wrong target or initiating too many changes at once can overwhelm the patient and lead to poor adherence’.
Nurses play a critical role in reducing diabetic difficulties through holistic care and education. The health care team can prevent such complications in patients by providing diabetes education especially to newly diagnosed patients. This can include creating a multidisciplinary diabetic control regimen by meeting patients regularly to check upon patients’ compliance. Through these interventions, nurses can greatly reduce diabetes complications in patients. When diabetes is not managed appropriately, it can put the individual at risk for long-term health and social problems. The role of the nurse in educating children and their families on the management of their care is imperative. Nurses can provide this information in a variety of settings, such as hospitals and schools. Good management of diabetes can be difficult for anyone, but there are special challenges when the effected person is a child. Youth with diabetes have a much higher rate of depression than the general population (Kanner, Hamrin, & Grey, 2003). Young children may not understand why they need treatment and have their fingers pricked all the time. The teenagers are usually more interested in fitting in, and doing whatever their friends are doing at the time (Nabors, Troillett, Nash & Masiulis, 2005). All of these challenges increase the need for good education to prevent diabetes related health problems.
The average hospital stay for newly diagnosed child with diabetes is less than three days (Habich, 2006). This is barely enough time for the child, and his or her family, to learn the minimum skills needed to manage this disease at home. Some basic skills include how to check blood sugar level, what is the normal range, what to do if it is not within the normal range, and how to administer insulin. After being discharged from hospital most children spend a long time of their day at school where the school nurse will play a role in the management of their care. The nurses may also be the only ones at school with enough knowledge about diabetes to educate the students’ teachers and coaches about their disease. Educating the school staff is important because they need to watch the children for signs and symptoms of hypoglycaemia, such as nervousness, shaking, irritability, or blurred vision. They should also know how to check the child’s blood sugar if they suspect it is low, and what to give them if it is. This happens especially if the child is still very young and is not yet compliant. When the child goes for a school activity, the teachers or those caring for the students should always have something sugary such as sweet drinks or sweets which can raise the child’s glucose level quickly when necessary. Nurses are both educators and managers of care at schools. According to Brown, S.A (1999), physician encouragement can successfully assist patients change their behaviours. They may also organise support groups if more than one child is diabetic, so that the students can discuss among themselves some issues regarding their illness. The more children are educated about their own disease, the better the chance of it being managed properly.
According to ADA 2005, it is important for physicians to provide patients with blood glucose goals. To achieve these goals, patients may need counselling on how to appropriately balance their caloric intake, physical activity, and insulin doses throughout the day. This balance requires patients to learn how food, physical activity, and insulin affect their blood glucose levels. Physicians may refer a patient to a certified diabetes educator at the time of diagnosis or if the patient is unable to meet his or her glycaemic goals.
Diabetes self-management education is the essential foundation for the empowerment approach and is necessary for patients to effectively manage diabetes and make these decisions. Funnell, M.M. et al. (1991) state that the purpose of patient education within the empowerment philosophy is to help patients make decisions about their care and obtain clarity about their goals, values, and motivations. Patients need to learn about diabetes and how to safely care for it on a daily basis (Anderson, R.M, 1995). It is also essential to give information about various treatment options, the benefits and costs of each of these strategies, how to make changes in their behaviors, and how to solve problems (Arnold, M.S., 1995). In addition, patients need to understand their role as a decision-maker and how to assume responsibility for their care by means of giving appropriate information.
The DCCT (Diabetes Control and Complications Trial, 2001), demonstrated that tight control of blood glucose levels can cause weight gain and even obesity. Patients should be reminded that food portion control and lower caloric intake plus regular physical activity are critical to avoid weight gain. When dealing with diet, diabetic patients should only eat sweets in moderation. To slow the rapidly rising blood glucose levels caused by sweets, patients should eat them with other foods when possible and use rapid-acting insulin (ADA, 2005). Eating at bedtime and eating other snacks are largely needless to raise blood glucose levels if a patient uses insulin. On the other hand they may be necessary if the patient’s blood glucose level is low.
If the patient is still dependant, parents should be aware of the products available on the markets which are good alternatives of the normal sugar-based ones. It is ideal that people should be encouraged to ask more about these foods and where they are available. In England, a structured educational programme (DAFNE) to help people with Type 1 Diabetes exists. This is called ‘Dose Adjustment for Normal Eating (DAFNE). Making use of this programme persons learn how to regulate their insulin dosage to suit their free choice of food, rather than having to work their life around their insulin doses. Similar programmes will be precious for diabetic patients in Malta if they are implemented.
The patient or physician should teach persons who have frequent contact with the patient about the symptoms of hypoglycaemia. They should be knowledgeable on how to treat the condition, how to overcome the patient’s occasional hypoglycaemia, and the importance of remaining calm during an episode. If the patient needs help, they should simply provide him or her with a source of sugar. Patients usually recover quickly and if not, additional sugar can be given. If extreme hypoglycaemia inhibits a patient from eating or drinking safely, a single injection of glucagon (1 mg intravenously or subcutaneously) usually will restore consciousness within few minutes.
One should pay special attention when having excessive alcohol consumption. This increases the incidence of hypertension and stroke and inhibits the liver from releasing glucose, exacerbating hypoglycaemia. Patients should limit alcohol consumption to one to two drinks per day and focus on maintaining a normal blood glucose level when drinking alcohol (Whelton, P.K, 2002).
Regular physical activity is especially important for patients with diabetes, because inactivity in these patients is associated with a two times higher risk of cardiovascular disease. According to Moy, C.S. et. al (1993), patients should exercise for thirty to sixty minutes daily at an intensity of at least a brisk walk. These people should be counselled on how to accommodate exercise’s effect on blood glucose levels. Physicians should tell patients that insulin is absorbed and peaks faster during exercise, especially when injected into the leg.
Klonoff, D.C, (2005) recommends that patients should assess fingertip blood glucose levels at least three times daily and record the results whenever they notice that it is not within the normal range. In addition, patients should test their blood glucose levels before and after exercising, before driving, and when they are uncertain if their blood glucose is at an appropriate level. Bedtime testing is especially important because nocturnal symptoms may go unnoticed, causing severe hypoglycaemia. Patients should know how rapidly their insulins take effect, when they peak, and how long they are active. Each type of insulin has distinct advantages and disadvantages.
People with diabetes have an increased risk of depression and anxiety, which may be why many diabetes specialists regularly include a social worker or psychologist as part of their diabetes care team. One important aspect of the experience of caring for a child with a chronic illness is social support. Social support can be positive when social interactions are advised and these can leave a fruitful impact on health and well-being. On the other hand, certain social contacts can be stressors rather than supportive. This may include ‘creating uncertainty and worry, negative labelling, giving misleading information and creating dependence’ (Suls, 1982). There are support groups available both online and in person. Although support groups are not for everyone, they can be good sources of sharing of information. Group members often know about the latest treatments and tend to share their own experiences or helpful information. It is well understood that a supporting family background and a combination of medical professionals involving nutritional therapists, nurses, physiotherapists, education supervisors and the diabetic specialist, lead to the successful management of this increasingly common childhood illness.
Patients with diabetes should be reassured that they can do almost anything those without diabetes can do as long as they maintain glucose control. Family doctors can significantly influence their patients’ outlooks on living with diabetes by educating them and encouraging them to take control of their health. The previous recommendations focus on the key educational messages that patients with diabetes need to know. Taking the time to explain these recommendations, instead of simply providing written materials is beneficial to patients. These discussions can increase patients’ satisfaction and understanding and benefit their future health.
The major focus of Diabetes is the need for adhering to treatment. Also it is imperative that individuals follow the dietary requirements in order to help manage the disease and ensures that certain problems like hypo or hyperglycaemia attacks are minimal. Mancuso et al. (2003) emphasises that education of both children and parents is of extreme importance for understanding diabetes and all it is about and subsequently being successful in long term care. Following the previous recommendations ensures that individuals are empowered to improve and hence have the best quality of care possible.
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