When being diagnosed with a chronic disease, it is not like catching the flu or breaking a bone, where one knows that sooner or later he/she will be feeling better. A person having a chronic disease is not sure of when he/she might feel better, as a matter of fact the disease may never go away, and actually it could get worse. These patients, most of the time feels tired and in pain however, it might affect the person’s physical appearance and competence. At certain stages, a chronic disease might prevent the person from working thus, causing financial problems and stress. A sense of angriness is also common, while asking oneself, “why this happened to me?” On the other hand, the family and friends of the patients diagnosed with a chronic disease are also affected, especially due to on-going changes in their health status. The level of stress could easily increase therefore, becoming a prolonged subject thus, leading to frustration, anger, hopelessness, and in certain circumstances it could lead to depression and suicidal thoughts.
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Diabetes Mellitus, usually known as diabetes, is a long term condition where there is a large amount of sugar in the person’s blood system and the body is incapable to use it accordingly. Diabetes can be diagnosed at any age and it develops when the pancreas is not able to produce enough insulin or when the body cells are unable to react to the insulin being produced.
There are three types of diabetes:
Type 1 diabetes is when the pancreas is not able to produce insulin. This, happens when the cells which produce insulin in one’s body are destroyed. It is most common in children and adolescents though, could develop in adults. In type 1 diabetes the patient needs to inject insulin on daily basis.
Type 2 diabetes is when the pancreas is producing insulin but it is not enough for the needs of one’s body. It could also be that the insulin being produced is not being used correctly by the body. These patients are not dependant on insulin though, they still might be needing insulin if it is not well controlled or if the body does not respond to oral treatment.
Gestational diabetes is when women have high blood glucose during pregnancy, even if they never had diabetes before. However, this could lead to type 2 diabetes after pregnancy.
The impact of Diabetes Mellitus in patient and carers
The persons’ impact when diagnosed with diabetes varies on different aspects including, psychologically, socially, economically, emotionally, and spiritually. There is a sense of shock, since the day before he/she was feeling all well and after blood tests he/she was told to have diabetes. Such patients don’t want to believe what they are hearing and end up in denial, were one keeps on saying that he/she is feeling well. These patients don’t come into terms that the condition is so serious. Anger is another element that they could develop, which sometimes these patients don’t even realize due to the amount of frustration, and one keeps on saying “this is not fair” and “why me?”. A person with diabetes might even feel guilty, thinking that he/she had brought the condition, by eating a lot of chocolate since he/she was a child. Moreover, they could also blame Jesus for such a disease, especially if they suffer from other chronic diseases.
As well known, living with diabetes could be very difficult to cope with thus, causing an enormous impact on the persons’ quality of life. Socially, their life changes as they will feel a loss of freedom to eat, since the person needs to change his/her diet, even though they have the best diet, which is even good for healthy persons, in order to live a healthy life. They don’t accept the fact that they have to limit the amount of food intake so that there won’t be any consequences. This is more difficult for the elderly to absorb, especially when it comes to bread. They won’t accept the fact that they could only eat one slice of bread, if it is not brown. Moreover, most of our elderly people work on their fields, and yet again it is hard for them to limit the amount of fruit and cut down certain fruits. Furthermore, the elderly might end up depending even more on their family, since they might be suffering from other chronic conditions therefore; they might need transport to attend hospital appointments, as well as might have certain limitations in doing certain tasks, like having a bath, eating or getting dressed. Due to this, their carers might be frustrated and difficult to cope with them.
Luckily enough, the health system in our country is free of charge so these patients won’t go through a lot of economic problems, since their treatment and hospital appointments are offered free of charge. However, they might still be suffering economically, as they start missing a day from work due to hospital follow-ups, admissions to hospital or not feeling fit to go to work. Men do tend to suffer from high level of stress when diagnosed; this is due to the fact that they think that, as the disease progresses they have to stop working and will be worried who will be taking care of his family. They don’t understand that by controlling their daily lifestyle, one could live a normal life.
It has been shown that diabetes implements psychological burden both on the patient and family. This is well argued by Egede, Zheng & Simpson, (2002) were they clearly stated that, considering the fact that psychological functioning would be poor, it might easily contribute suffering which might prevent the patient from successful self-management of their diabetes and this could be amalgamated with costs and poor medical outcomes. Therefore, health professionals need to keep an eye on the patient’s psychological well-being, as by treating and talking certain issues could easily improve their overall clinical outcomes. Moreover, diabetic patients who are less likely to control their glucose level are more prone to psychiatric illnesses, including depression, eating disorders and sometimes even suicidal thoughts. This is mostly due to the significant changes one needs to do in their lifestyle, together with prolonged poor management of treatment.
Furthermore, the use of internet has become quite common among the patients therefore, having a good knowledge about possible long term complications, though it is good to know, could terrify the patient. At times, even minor injuries could implement a sense of discouragement and angriness as one would know that their body would take long to heal while, being more prone for infections. However, the sense of angriness could also be a call for help, were one is revealing his/her own fears of long term problems, deep emotions and even a sense of guilt about not being enough manageable with treatment and/or diet. Once again, health professionals need to be aware of such attitudes, as by listening, explaining and asking about the patients’ worries might relieve certain concerns regarding any underlying fears. Another psychological problem that is not usually brought up easily by the patient thus, need to be carefully tackled is, sexual dysfunction. A study conducted by De Berardis et al. (2002) resulted that, 45.6% of patients with frequent erectile dysfunction reported severe depressive symptoms. Nevertheless, sexual function is to be acknowledged as an essential part when one is dealing with a diabetic patients’ health.
Patients suffering from type 2 diabetes can be initiated on insulin therapy, mostly due to uncontrolled glucose level. Again, emotionally they feel devastating, thinking that their condition is going to get worst, and further complications that they hear from other persons like going blind, amputation of limb, kidney failure, etc. going to develop soon. Nonetheless, Taylor et al. (2002) found out that at certain times, the health professionals were afraid to introduce insulin therapy to the elderly even though, the elderly were found to cope really well with glucose testing and self-administration of insulin. Insulin does tend to stabilise their blood glucose levels within few days thus, helps in allowing them to feel better and improving their cognitive function.
On the other hand, to a certain point it is a whole different world when either children or adolescents are diagnosed with diabetes. In young children it is the parents who take control of the disease, and yet again their life changes since they need to adapt their lifestyle with that of their child. Parents might go into emotional problems, when they know that they have to explain their young child about the disease. Moreover, realising that their child will be on insulin and having their blood glucose level monitored on daily basis can be quite overwhelming for the parents. Therefore, parents could experience bereavement which is associated with reactions of grief (Lowes et al., 2004,2005). However, the parents without knowing might end up getting hold of their child’s life a bit too much because of the possible complications that might arise. Another psychological problem that influences the parents is insulin, as it could be hard on them to inject it on their own child. Of course no parent wants to hurt their child apart from being difficult to explain to their child, that it is for their own good. Even though as times goes by it becomes part of their normal life. Furthermore, parents might find it difficult to control their child’s dietary intake, since it is not easy to find a balance between their carbohydrate intake, insulin, and exercise which easily cause changes in the blood glucose level. Since hypoglycaemia can happen easily in children, sometimes with no particular reason, parents might find it difficult to allow a level of independence to their child. Therefore, this could result in emotional changes in the child such as, fear, angriness, sadness, and anxiety.
Parents of children suffering from diabetes might go into economic problems, since a child depends on their parents. Therefore, a parent needs to miss a day from work to attend a hospital appointment or even one of the parents might need to reduce the working hours so as to have more time with their child. It was shown from studies that, when the parents are an essential part in the child’s management of diabetes care, there is better adherence to treatment thus, reducing the possibility of hospitalization (Hanson et al., 1987; La Greca et al., 1995; Wysochi et al., 1995). Nevertheless, the impact of diabetes in children starts when they start attending school, as other children could bully or tease them by offering them food which they aren’t allowed to eat. Therefore, this could lead to a loss of confidence in social interaction, and they might feel that they are not accepted in society due to their condition thus, resulting in feelings of angriness, frustration, and distress. This is well backed up by Kovacs et al. (1985) were they stated that, due to mood changes, sense of guilt, feeling sad about what their future will be like, missing school and even insulin shots, are common problems encountered within the young children.
Moreover, when they reach their teens, they might ignore everything so as to appear normal in front of their peers, this is to try and achieve a state of normality. For this reason, it could lead to uncontrolled diet and even missing insulin shots so that their friends won’t judge or bully them. At times, they even don’t to go out with their friends as they might be afraid of having an episode of hypoglycaemia. On the other side, adolescents would be feeling distressed when their parents are over protective towards them, and won’t let them go anywhere without them. However, this could also lead to some sort of depression, as they start thinking that they could never live a ‘normal’ life like their friends. Unfortunately, evidence has shown that at certain times in adolescents, suicidal thoughts were noted thus, hindering the adolescent quality of life and self-management (Debono & Cachia, 2007). Thus, health professionals do need to provide adequate education and support to the parents since the day of diagnosis, as well as when the child grows up, so as to assure them that their child could still live a normal life and clear up any psychological problems. As Schur et al. (1999) stated, parents who are knowledgeable and capable of understanding what diabetes is all about to their child are more competent to provide their child with the appropriate care. However, understanding the child and having an element of knowledge are not the only answers in providing better care to their child, as parents do need also to know the ways how to support their child (Kyngas & Hentinen, 1995). Therefore, parents need to trust their child and of being capable to take care of themselves, since this will allow self-motivation and won’t feel different from the rest of the family and friends. Thus, decreasing the level of psychological problems these children and adolescents go through.
Empowering the patients and carers
Patient empowerment is a means of helping patients to be able to make his/her own decisions together with, being active in their own self-care. However, meaning also, that the patient is getting well educated in how to manage and implement new tasks in his/her daily living, managing the effected roles in their life, as well as controlling the emotional impact of the illness.
There are various ways how health professionals could help patients to cope with diabetes. The common sense model of self-regulation plays a good role in aiding patients to reduce obstacles and achieving identified goals. The common sense model, guides the chronic ill patients to come into terms with their disease, understand better what it’s complications could be thus, they will be capable to evaluate the effects of acting on this understanding (Leventhal, Meyer, & Nerenz, 1980).
Leventhal, Nerenz, & Steele, (1984) described five components of illness representations in order to help patients make sense of their symptoms and monitoring any coping actions. These include identity, cause, time-line, consequences, and controllability.
Identity is the name that patients and other people give to the condition, together with all the symptoms that go with it. Unfortunately, people do tend to label these patients, even though sometimes it is with no heart feelings, but for the patient being diagnosed might mean a lot. Therefore, through the health professionals’ knowledge and experience, it is their role to aid patients in identifying behaviours, personal goals and motivating them to acquire self-determined goals. However, it is quite vital to help diabetes patients to come into terms from the beginning that they are the only ones who can manage efficiently their disease.
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Cause is another disease representation. This representation might be established from further information gathered through the patient’s own experience from family members suffering from diabetes, and could also be gathered from other lay persons, media, and health professionals, reflecting certain issues of unhealthy diet, lack of exercise, stress, and other pathogens. As mentioned above, patients do feel guilty, thinking they brought the disease on themselves by not eating healthy. Holman & Lorig, (2000) noted that when health professionals engage the patients as their partners in their on-going care, without any doubts they do intend to commit themselves better in managing their chronic disease. However, patient education is quite vital as it aids them to understand better their disease, improving their knowledge, and increasing skills and knowledge thus, allowing the patients to take over on their condition. Cause could easily prolong depression that is why it is essential to empower these patients to take into account physiological and personal psychosocial factors. At the end, helping patients to discover and develop the fundamental capacity in order to be responsible for their own life is the health professionals’ aim. This is patient empowerment (Funnell & Anderson, 2004).
As health professionals, one does need to educate the patient regarding the benefits of a well-balanced diet and performing regular exercise. Evidence have shown that, eating a healthy diet and undergoing regular exercise benefits in decreasing the risks of further complications associated with diabetes (Clark, 2004). After undergoing blood tests and other tests, to evaluate if the patient is diabetic, the first target in controlling the blood glucose level is diet, exercise, and self-monitoring of blood sugar level. Again it is the health professional’s role to enhance motivation and providing them with diet counselling and leaflets. Furthermore, within the primary setting, weight reducing sessions are provided thus, empowering the patient to take control over his/her dietary habits.
Time-line is the prognostic belief regarding for how long the disease might last. Patients diagnosed with diabetes at times they don’t come into terms that they need to be on medications, diet and/or insulin for life. Therefore, when hemoglucose test or blood test results within normal ranges, patient might stop his/her medications without consulting. Both nurses and medical practitioners need to leave behind the approach of trying to get patients to adhere and comply better with their condition. The health care provider is usually seen as the person who is the expert on the disease, and knows what the best is for the patient, while providing an advising system to treat patients. Therefore, this kind of approach might cause resistance and could easily neglect what is the most vital to patients. However, due to this, patients might be in denial and don’t be able to move on thus, not being able to control their glucose levels. On the other hand, Funnell & Weiss (2008) argued that, as time goes by, it is the patients’ him/herself who suffers from diabetes that will eventually become an expert about his/her own diabetes, how it does effect him/her physically, practically and emotionally. Additionally, to establish an effective behavioural intervention, health professionals need to first evaluate what are the basic problems for poor diabetes control; these also include psychological and social problems together with lack of knowledge. Nevertheless, an interpersonal relationship needs to be formulated, so both the patient and health professional could listen to each other’s opinions, while setting up a sense of trust in each other therefore, when the patient is ready to listen and learn more about the condition, one could provide directives (Delamater, 2006).
Consequences, is another disease representation within the common sense model. The patient will be in a terrifying state because of the consequences that could develop due to uncontrolled diabetes. However, the health care provider needs to reassure, that he/she could still live a normal live even though there is the need to change their daily life style. An active listening strategy could be used, were the nurse will help the patients to set up a plan that accords their lives, rather than requiring patients to adjust their lives to become suitable for their diabetes. Moreover, to prevent any consequences it is of vital importance to empower patients to recognize their sources of practical and emotional support. Family members are usually the primary support team for these patients. Thus, others could inquire support from friends, health care providers, and other people suffering from diabetes. Nevertheless, the most important is that they have someone with whom to share their concerns. Luckily enough, around Malta one might find various diabetes support groups, were one could seek for help and support. Hearing and speaking to someone who suffers from same condition, allows them to understand better their condition and could easily pick up certain tips how to deal with any kind of symptom, rather than providing them with informative leaflets. Since when giving them leaflets, most of the time they do read them out but eventually they tend to leave them there and forget about them. Support groups are also established for the patient’s family and carers as without any doubts, their carers’ life changes too in order to support them with their condition. At the end, both the support and health care teams need to evaluate what the patient wants and demands from them, so as to abate any misunderstanding and frustration. In return nurses and the support team leaders have to assist the patients in figuring out what they could faithfully offer.
Controllability is the belief regarding whether the disease could be kept under control together with the degree to which the patient plays an important role in acquiring it. Here the health care providers need to help patients and their carers to develop a health care plan. Both the patient and health professional need to work hand in hand and sometimes patients do accept the practitioner’s recommendations regarding certain treatment but then prefers to make their own physical and meal plan. However, nurses do need to aid patients to acknowledge how much flexibility they need in their life. Since certain patients are capable to follow a strict meal plan while others prefer to change their daily lifestyle to accord with their commitments. Moreover, certain patients prefer to have their blood glucose level checked daily to plan their activity and dietary intake. Furthermore, establishing targets could also aid in controlling their diabetes, for example, controlling their weight, blood pressure, and their HbA1c level. Thus, when having positive results, patients tend to be more motivated. However a self-management plan includes exercise, meal plan, medications, insulin, blood sugar monitoring, stress management, problem solving, and emotional support. This plan needs to compromise the patients’ and carers’ ability to involve these strategies in their daily routine. Teaching both the patient and family how to check their own blood glucose level and how to self-inject their insulin provides an element of independency thus, reducing stress levels of having to take time off from work to attend the clinic.
Empowering the children and their family might be complex and energetic. Health professionals need to be quite skilled, having good communication relationship, a sense of humour, compassion and possesses a good knowledge in paediatric diabetes. Psychological interventions are vital for the child and adolescent suffering from diabetes especially if their parents are involved. Through research it has been noticed that, when having their parents part of their behavioural procedures, like self-monitoring, planning a goal, good communication and support, being positive towards them, and sharing responsibility in their diabetes management has improved their adherence in medications, diet, and glucose levels (Debono & Cachia, 2007). Moreover, being part of a support group where the participants are all youths, might help them to feel better within themselves and come into terms that they are not the only one’s suffering from diabetes. Thus, making friends with each other could help them to mature and help each other in difficult moments. Daisy that is part of the Maltese diabetes association, does provides support groups for the parents and mostly support groups for the children and youths, live-inns, summer camps, and various activities to help them understand more about their condition and how to live with it. Mostly, they help them to be in control of their diabetes and not the other way round.
Like adults, both children and youths need to have a healthy diet plan since as well known it is the first step in controlling blood glucose levels. However, youths need to be educated to be strong and not neglect their diet so as to look “cool” in front of their friends, and afterwards end up injecting extra units of insulin from their normal dose. Here family does play a fundamental role, since if the family is obese and might be suffering also from diabetes and have poor control, without any doubts they are being a column of unhealthy behaviours. Nevertheless, when the parents are implementing healthy behaviours, they are sharing positive influence towards their diabetic child.
Moreover, the health care provider still needs to help the parents of young children and youths to sort out a self-management plan. Young children needs to be thought the signs and symptoms of hypoglycaemia and when they feel the symptoms to eat some carbohydrates, since eating sweets it will only increase their blood glucose level temporarily. However, youths do need to explain to their friends regarding their disease in order to be able to help them if an episode of hypoglycaemia occurs.
Many different interventions has been established throughout the years in order to empower patients who suffer from diabetes, these include complex educational programmes, which are an important role in empowering these patients to achieve in managing their diabetes. Through evidence, it have been shown that both the patients and their carers are acquiring good approaches and contacts to services required to empower them in managing their lifestyle and health (Begum & Por, 2010). However, Begum & Por (2010) argued that certain patients with diabetes are still unconcerned that support groups or educational programmes are available thus, meaning that these interventions are not well publicized. Therefore, health professionals do have an important role in instructing the patients and their carers about these services.
Moreover, in order to be able to assess the common sense model, there is the need of describing how to implement these interventions and protocols need to be established and published. This will help both the health professionals and lay persons to get a better understanding how these interventions are implemented and through this one could build-up a body of practical and theoretical knowledge. Health psychologists do have a fundamental role in helping the patients and their carers to implement the common sense model into their daily living.
Furthermore, health professionals need to come into terms that it is essential to involve the parents when caring for children with diabetes, so as to help them managing and controlling their condition. One needs to keep in mind that young children are not capable of caring for their diabetes on the other hand; youths cannot be counted on being able to implement all of their diabetes management care on their own. Therefore, educational programmes need to be provided to the child’s whole family.
To conclude, it is essential that health care providers teach these patients that they are the leaders for their diabetes, how to control and that self-management care is not an easy task if they are not motivated. However, by aiding them and keep following them on regular basis on could help these patients and their carers to successfully live a healthy lifestyle while becoming their own “doctors” in self-managing their condition.
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