The aim of this essay is to explore and demonstrate understanding of how Patients with chronic illness adapts to change. Chronic illnesses are defined as illness that are permanent or last a long time or frequently recurring health problems (Smith 1997).Chronic illness commonly applies to conditions that can be treated but not necessarily cured. It may get slowly worse over time. It may cause permanent changes to the body. It can increase stress and certainly affect the person’s quality of life.
Living with chronic illness has a profound impact on one’s life and creates a lot of grief in responses to the loss. Patients are likely to endure multiple losses. There are many types of chronic diseases such as diabetes, stroke, and cancer and end stage of renal failure and so on.
In this essay I will discuss how patients with renal failure adjust to the change and the effect of chronic illness. It includes psychosocial perspective of chronic illness. It also contains theoretical models of loss and adjustment. I used a patient case and library resources such as journals, books and web sites to get the relevant information.
People are living longer and advances of modern medicine may prolong life. It is important to maintain life quality. Patients may have difficulties when they are faced with life threatening diseases or trauma. They may experience fear and loss of confidence, often making rehabilitation slow.
I worked in a rehabilitation (rehab) ward for eight weeks. I followed a patient case to understand chronic illness and adjustment. Anne is in her forties and she has been married for fourteen years. She has two children age 20 and 19 years. They moved recently in to new house with a big mortgage commitment. Anne felt generally unwell for several weeks. Then she began to feel weak and breathless and very itchy. Over one weekend she developed a great sense of weakness. Then by Monday she felt very ill and was admitted to hospital. After a few tests the doctor informed Anne that she developed a chronic renal illness. After her initial treatment she transferred to rehab ward. Anne’s chronic illness affected her physically and psychologically as well as socially.
Anne was admitted to the hospital in January 1999 with one week of history of increasing severe pain in right thigh and slightly less pain in left thigh. She had a long history of hypertension. Her reduced kidney function was due to Atheroembolic disease. Atheroemboilic disease (AERD) refers to an inflammatory reaction in the small blood vessels of the kidney.
It occurs when cholesterol crystal lipid plaques in the walls of blood vessels (Brundage 1992). Anne’s temperature on admission was 38%. Blood pressure 170/80mmHg, pulse 110. Blood cultures were negative on several occasions, but she was receiving vancomcin (antibiotic to treat infection). Her physical examination revealed, and she been found acutely distress.
According to Smith and Speck (1982) P .7. “chronic renal failure is a result of a number of pathology processes causing irreversible damage to kidney tissue”. Chronic renal failure is caused by a slow progressive kidney disease over a course of 10-20 years (Smith and Speck 1982). At this stage there is mass destruction of nephrons, so that the kidneys are unable to maintain fluid and electrolyte balance and excrete waste products from the kidney.
In end stage of renal failure the maintenance of life can only be ensured by haemodialysis or renal transplantation (Schmid et al 1998) Haemodialysis is a term that is used to describe the removal of waste product and water from the blood through a filter dialyser (Paul and John 1998). Anne needs a dialysis treatment three times a week. Living with a dialysis has a profound impact on Anne’s life. It is difficult to come to terms with the feelings of devastation and total loss.
From the earliest days of haemodialysis, it was noted that patients go through a recognisable series of stages following the start of treatment (Abram 1970). These may overlap, or fluctuate. Anne showed various emotional signs: – tears, anxiety and irritableness. Illness is a process and like all process it has different stages with different characteristics. Each stage of illness involves loss, grief and acknowledgment of internal pain.
Loss can be the experience of losing something. Ann’s kidney failure can be a loss; the illness involves loss of kidney function. The emotional trauma of chronic physical illness is caused by loss. In the face of such loss to experience fear, anger, desperation and anxiety is normal. Anne’s emotional trauma is normal, in fact it would be abnormal to deny her health and her life style had changed for the worse. In chronic illness patients are likely to endure multiple losses that may include the loss of control and personal power which is important contributor to self esteem, as well as loss of independence, loss of identity, loss of financial status, and loss of life style ( Clark 1993). Perhaps the most difficult of these transitions is the loss of the identity one held before becoming sick. Ferguson (2004) cited by Goffman’s theory (1963) described how individuals with impairment could be stigmatised and labelled as failed members.
Ann’s irreversible internal illness can creates further grief and frustration. Anne’s kidney failure caused grieving. Grief is a reaction to significant loss. It is most frequently an unhappy and painful emotion triggered by the loss of loved one (Baldree et al 1990). These same emotions can also be experienced by someone with chronic condition who must deal with loss of autonomy. Grieving is a process of adjustment to the loss and it is universally recognized across all culture (Clark 1993).The process of grieving usually occurs when the loss involves death but it can also coming to the terms with health through an illness.
Kubler- Ross (1970) proposed 5 stages of grieving, Such as denial, anger, depression and acceptance. Since her idea was published Kubler- Ross’s work has been applied to the many situation of change people experience in a life time, including chronic illness. There is no limit set for each stage, as every person progresses toward acceptance of their illness at their own time. Some people may experience more than one stage a time or in alternative order.
She presented them as an attempt to summarise what we have learned from our dieing patients in terms of coping mechanisms at the time of terminal illness (Kubler-Ross E 1970).
Clark (1993) cited by Averill (1968) also identified shock, despair and recovery as the relevant stages of grief. Additionally Parkes (1972) identified numbness, pining depression and recovery stages which followed the loss.
Despite the work of Averill and Parkes being highly important to describe grieving patient, it was Kubler-Ross work which was essentially received and continues to receive the most attention. Her work is one of the several stage/phase types of analyses which were cited concerning the experience of both dying and bereavement in 1960’s and early 1970’s.
Critics argue that the steps are too rigid (inflexible) and not applicable to the grieving processes, yet people all over the world have found her work to be useful. In fact most research said that we are going through this process numerous times a day. Any change of circumstance can cause us to go through this process. But we don’t have to go through the stage sequentially. The intensity and duration of the reaction depend on how significant the loss is.
According to Clark (1993) the most significant criticisms of Kubler Ross work come from Kastenbaum (1975), Germain (1980) and Charmaz (1980). They address the problem of stage theories in general. Kastenbaum said using the term “stage” implies a set order of set conditions. He asserts that there is no evidence that a bereaving patient goes through the exact Kubler Ross stages in their proper order. He also said a Patient with chronic illness could experience the stage in a different order or could experience emotions not even mentioned in the Kubler Ross stages.
Clark (1990) cited by Kellehear (1990) P72 “indicate that cultural differences in coping may be interpreted in terms of personal inadequacy” “there is a risk that professionals may misread description as prescription” (Lttlewood 1992). The theory should be used as an example for particular image but not as a command other wise it can cause misunderstanding for professionals. Clark (1990) P72 cited by Kellerhear also said “the sociology of death, dying and bereavement is still in its infancy”.
From the earliest days of haemodialysis, it was note that patient go through a recognizable series of stages following the start of treatment. The stage can be identified by care givers and patients (Abram 1970).
Initially Anne was relieved. It could be for several reasons. First she felt good because of the benefit of the treatment. And secondly the experience of haemodialysis is usually less traumatic then normally expected. She accepted her chronic illness and denied the consequences. Anne showed two stages at the same time which is acceptance and denial.
The second phase is depressive reaction. In this stage Anne showed anger as well as depression. Ann was depressed most of the time. In this stage Ann’s aware that dialysis can not make her fully well. Her tiredness, lack of energy, irritability and poor sleep make life on dialysis hard to tolerate. As I mentioned earlier Ann and her husband were committed to a big mortgage. The effort to continue to work while under these pressures may seem to be too much. That can cause fear, financial and family consequences.
The third phase is realistic adjustment. This period normally takes time for the patient to adjust. Anne not adjusting to the change, she was in the second stage. During adjustment period it is not surprising to observe patient in low mood, irritableness and quick to take offence and so on (Harwood et al 2005).Many patient experience intense helplessness before they adjust to the change (Abram 1970).
I didn’t observe Anne’s final adjustment. Because my placement was finished before I observe her final adjustment process. Some people cope more easily than others psychosocial and emotional aspects of kidney failure (Gordon et al 2003). Coping can be defined as efforts to manage, which allow the word to include any of the person’s thoughts regardless of how well or badly they work. Individuals with renal failure are likely to appraise aspects of their environment as damaging or potentially threatening (Adrian 2004).
Adaptation and coping are often treated as synonymous terms, but they are distinct from each other. Adaptation is a broader concept that includes routine actions. Adaptation in a psychosocial sense refers to individual survival as well as to the capacity to sustain a high quality of life and function on social level.
Anne’s coping strategies show slow progress. One Scandinavia study examined coping strategies and sense of coherence and this research indicates that an individual’s ability to cope with illnesses is influenced by a range of factors such as illnesses related factors, age, personality, social and culture factors and support (Harwood et al 2005).
Anne’s become more uncomfortable with her illness. It can be several Reasons one she became more afraid of the consequence of kidney failure and also she developed side effect from her medication. The more a patient feels threatened by their illness, the harder they will find to cope (Bolton and Owen 2002).
Aspects of a patient’s personality can affect their ability to cope with their illness (Gurklis and Menke 1995). Anne’s personality is not resilient personality which was not allowed her to see good in difficult situation.
The amounts of quality of support available to the patient are further influence on how well they cope with kidney failure. For many patients the immediate family is the main source of psychological support. Anne’s husband and children were visiting her twice in a week. That might not be enough for Anne recovery. Hospitals do not always provide kidney patients with the support they need. Hospital is a dull place for patients; therefore it can cause depression and mood change. Churchill et al (1999) recommended that each dialysis centre provides an established multi-disciplinary team for chronic kidney disease care, to deliver adequate medical and psychosocial preparation.
Several studies have demonstrated that early referral to nephrologist’s clinic decreases morbidity, mortality and health care cost.
Anne’s illness has a massive impact on her life. Her illness is a long term or life threatening illness, which can be extremely stressful. The treatment of kidney failure enforces major changes in life style. Ann has to adapt the new life routine. She also has to change her eating and drinking habits. In general Ann needs to adjust to the new life style. The work of
Kubler Ross has been of great value in terms of promoting our understanding people with chronic illness. A close supportive relationship between the nurse and patients is vital to create a climate of trust and support. From this assignment I learnt how chronic illness can affect people’s life. Patients are not the only ones who suffer when they have a chronic illness but significances others and family members also suffer. As I already mentioned chronic illness causes a stress, it requires a constant adaptation and challenging to get a better quality of life. As a nurse we all have to understand and meet the needs of the family as well as the patients.
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Adjusting and adapting