In this assignment, the author is going to investigate the effect a chronic disease can have upon a patient, the illness perceptions of the patient and carers about the condition and the way a patient and his/her carer can be empowered to cope better with the condition.
A chronic disease is one that lasts more than three months. It is characterised by symptoms like pain, fatigue and disability which cannot be relieved despite treatment. Sometimes these conditions can go into remission. People with chronic conditions generally learn how to cope with their disease and manage their symptoms. If managed well, they can learn how to lead relatively normal lives (Finseth, 2009).
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The Impact of Multiple Sclerosis on a Person’s Quality of Life
Multiple Sclerosis (MS) is a chronic neurological disease whose incidence is quite common among young adults. Onset occurs between 20 and 40 years of age and is characterised by inflammation and demyelination of the central nervous system (Barlow, Edwards & Turner, 2009). Multiple Sclerosis is a progressive and unpredictable condition and its symptoms are wide ranging effecting motor and sensory loss, loss of balance and bowel and bladder control and loss of cognitive functioning. The patient affected by MS also suffers from pain, fatigue, loss of eyesight and emotional and sexual dysfunction. As one can imagine, MS has a huge impact on all aspects of a person’s life. The patient is affected psychologically, physically, socially, economically and spiritually.
When patients are initially diagnosed with a chronic condition, they experience a wide range of emotions. For some, shock at the unexpected and unwanted news when the onset is sudden, for others the final confirmation of a diagnosis could almost be a relief that they finally know what is wrong with them. Backman, Smith, Smith, Montie & Suto (2007) state that sometimes a positive diagnosis provided confirmation of symptoms which were felt by the patient for a period of time which had not been accurately diagnosed. The emotions experienced by a patient and their family when faced with the diagnosis are always powerful and stressful. Different people react in different ways. After the initial shock, some go into denial, grief and anger at their loss of health or withdraw into themselves and shut out their family and the world.
As the disease progresses, the shock turns to anxiety, stress and depression. MS patients are known to suffer more from depressive symptoms than people with other long term medical conditions (Minden, Orav & Reich, 1987). People with MS also suffer more from mood disorders when compared with people with the same level of physical disabilities (Schiaffino, Shawaryn & Blum, 1996). When people with MS start losing their functional abilities and lose their ability to carry out their normal activities, stress and anxiety increase leading to mood swings and depression. This may lead to suicidal thoughts, isolation and increase in somatic complaints (Feinstein, O’Conner, Gray & Feinstein, 1999). Mothers with chronic conditions may experience feelings of guilt for being unable to take care of their children and partner and join in family activities. Others may have to give up their job, leading to financial loss and this adds pressure on them and their families and increases stress levels and psychological problems. The vast number of MS symptoms and side effects from medications can cause fundamental changes in how the body looks and feels. Therefore MS sufferers have to deal with the way they knew themselves to be and their body image since the onset of the condition. Symptoms such as spasticity, tremors, weight gain, foot dragging, muscular weakness, and fatigue can virtually change the visual appearance of the body. This makes it difficult to view a body affected by MS in a positive light. This causes loss of self confidence and emotional and psychological distress. It was found that people with MS, worried more about disabilities, had a worse body image and had more sexual problems even when only mildly affected. Women with MS were mainly worried about physical problems and being less attractive and men were mainly worried about sexual dysfunction (Pfaffenberger, Gutweniger, Kopp, Seeber, Stürz, Berger & Günther, 2011).
Multiple Sclerosis is an unpredictable condition with flare- ups where symptoms can be diverse or remissions were symptoms ease up. The damage or scarring to the nervous system is permanent therefore the patient suffers physical problems and disabilities. A patient with MS can have diverse symptoms which can affect eyesight such as double vision, blurred vision and even blindness. This can causes major problems with daily activities which interfere with work, mobility, daily activities and hobbies. For parents with little children, this can limit their involvement in helping with their homework and studies. Other physical limitations are loss of movement, balance and co-ordination together with difficulty in walking and fatigue. These have a negative impact on the patient’s life and that of their families. This causes feelings of guilt and of being useless because they cannot do all the things that they could do previously. Parents of young children, usually multitask by incorporating housework with playing with their children, getting down on the floor to participate in their games. This could prove difficult for mothers with MS due to their fatigue and physical limitations. In a study by Backman, Smith, Smith, Montie & Suto (2007), when patients suffered from multiple disabilities, physical limitations and fatigue were their main problems. Inability to do everyday things for and with their children, like dressing them, driving them to activities or playing physical games with them, contribute to women feeling different to other mothers without disabilities.
Apart from these daily struggles to cope with everyday life, people with MS have to cope with the pain they experience which is debilitating and stops them from living a normal life. It is not only individuals in the role of mothers who suffer from the physical impact of MS due to loss of functional ability, but all individuals whatever their status. The increasing effect of symptoms curtails an individual’s activities and leads to loss of independence. People who previously practiced a sport, had an active social life or was working towards a rewarding career may find it impossible to continue with life as it was prior to the diagnosis. Thornhill, Lyons, Nouwen & Lip (2008), found that patients often brought into a discussion the changes that had occurred because of their illness and its impact on their lifestyle, social life, ability to work hobbies and interests.
Social and economical impact.
Apart from all the physical manifestations previously mentioned which affect a person’s social life, MS sufferers may also have bladder and bowel problems, sexual dysfunction, hearing loss, cognitive and speech difficulties. As one can imagine these have a huge impact on one’s lifestyle. The person suffering from MS may be embarrassed to go out and socialise because of bowel and bladder problems. She or he will keep back from meeting people and maybe form a relationship due to sexual dysfunction. This leads to social isolation, loss of friends and their support. Seamark, Blake & Seamark (2004) state that most patients and their carers felt that their social life had been reduced to telephone calls. Social isolation can also lead to loss of work. Other symptoms which might cause a person to be unable to work or lose his job are difficulty reasoning and problem solving, loss of memory, decreased attention span and slurred speech. These cause problems in communication and the ability to finish a job well and on time. Losing one’s job causes loss of finance. People have to make do on fewer earnings apart having to fork out money for medication, disability aids and home help and other necessities. This leads to loss of financial independence or inability to provide for their families. The patient suffers from guilty feelings for being unable to provide for their loved ones, feelings of inadequacy, of being a burden physically and financially. These cause psychological problems, like depression, loss of self esteem, suicidal thoughts etc. It creates a viscous circle, one problem leading to another and usually causes a lot of anger usually towards their religious beliefs.
Chronic illness affects the person physically and mentally but also spiritually. The initial reaction a person faced with a diagnosis of MS might feel is one of anger against God and their religious beliefs. They might feel that they are being punished for not being strong in their faith. They feel that God has abandoned them and ask “why me?” Ultimately some people turn to their religious beliefs in order to try and make sense of what is happening to them. They find that prayer helps them come to terms with their illness and comforts them when nothing else makes sense. Among people who have religious beliefs, religious coping may have positive effects on physical and mental health.
Tanyi (2002) states that there are two aspects of spirituality. One aspect focuses on the religious beliefs, which include belief in a god and the rituals and practices that support those values, and the other aspect focuses on the “search for meaning in life, wholeness, peace, individuality, and harmony” separate from religious beliefs (Tanyi, p. 502). For people who have no religious beliefs or affiliations, the exploration of spirituality can help individuals deal with their illness (Puchalski & Romer, 2000) by creating an increased feeling of both physical and emotional well-being, particularly for people living with chronic illness ( Nicholls & Hunt, (2011).
It is important for health professionals to have some knowledge about the various spiritual traditions and, more importantly, some skills in communicating with patients about their spiritualities as these might be potential resources to improve the quality of life and coping skills.
Effect on family and carers
Chronic illness affects the life of both the patient and their carers. The disruption in the life of the whole family, be it the husband/wife, the children or anyone who takes on the role of the carer is immense. Any plans for the future, family activities and social life, are all curtailed, put on hold or completely removed from the picture. The carers also go through the turmoil the disease causes in the patients life and have to support and console him/her through his/her depression, stresses and anxiety as well as deal with their own emotions and feelings. They take on more roles within the family structure as the disease progressed (Seamark, Blake & Seamark, 2004) ; like for example driving the children to activities and driving the husband for treatment, medical appointments, doing all the household chores as well as taking care of the patient. This might lead to feelings of anger, frustration and feelings of unfairness, this leaves no time for relaxation and socializing and therefore the carers also end up socially isolated.
Children are also effected when a parent is affected by a chronic disease whatever their stage in life. They sense that something is happening in the family and therefore they should be informed about the disease depending on their age or capabilities and be given time to ask questions. This may help them come to terms with the changes which are occurring to their parent. Children may be teased at school because of their parent’s condition or lack of participation in school activities. The child will feel different because his parent is different and this might cause anger at his parent and guilt for being angry. The child might be shunned which will lead to isolation. Adolescent children might feel burdened with the added responsibility of caring for a parent with MS and younger siblings. They have less time to spend with friends; they feel tensions in the family and worry about the future. Support from the well parent, siblings, family and friends help the teenager to adjust to the changed circumstances in his life. Some positive effects of having a parent with a chronic disease were increased feeling of empathy and feeling more grown-up (Bogosian, Moss-Morris & Bishop & Hadwin, 2011). The parents of the patient with MS, apart from feeling all the emotions the rest of the family go through, might feel guilty of maybe having passed the disease to their child. They might feel overprotective and smother the patient with too much care and attention which might cause some tension. They may also be ‘burdened’ with caring for their adult child and her children, with increases in expenses, loss of free time and a change in life style. The family, friends and MS patient go through the disruption, acceptance and finally the adjustments to an altered life together. Patients are grateful for the emotional and tangible support that they are given by the people around them in order to help them cope with adjusting to life with a chronic illness (Thornhill, Lyons, Nouwen & Lip, 2008).
Illness perceptions and coping strategies
When a person is initially diagnosed with a chronic illness, he forms ideas and beliefs about the condition which will have an impact on the way he copes with the effects of the disease, treatment adherence, and the eventual outcome of the condition (Petrie & Weinman, 2006). The patient forms a unique personal model; the Common Sense Model or Self Regulation Model. These illness perceptions play an important part in determining how a patient will manage his condition. If a patient has a positive attitude, generally he manages his symptoms and treatment well. If he has a negative attitude, his adherence to treatment and self management is very low. In a study by Vaughan, Morrison & Miller, (2003) they found that patients with MS held beliefs of a strong illness identity, chronic time-line, no particular cause and no cure. Perceptions of limited control and serious consequences were also noted. This suggested that illness representations contribute to outcome.
Therefore, it is important for healthcare professionals to understand how the perceptions, experience and impact of having a chronic disease might influence a patient’s interpretation and response to it, so that they can deliver appropriate care (Hale, Treharne & Kitas, 2007).
In order to investigate patients’ perceptions of illness and their influence on the coping methods and eventual outcome of the condition, Leventhal et al, cited in Petrie & Weinman (1997), found that these health perceptions were made up of cognitive dimensions. These are:
1) Identity of their illness: this is the label one gives to the condition and its symptoms. Sometimes the patient experiences no symptoms and therefore does not realize the importance of following treatment regime or change one’s lifestyle. At other times, patients label themselves as having a condition, example arthritis, because they have pain in a joint, without a diagnosis and change their life style accordingly.
2) Casual beliefs: The patient tries to look for the cause of their condition, why they might have developed the disease. These beliefs may be formed through the media, reading, relatives, cultural influences, healthcare professionals etc. Casual beliefs are important as they may influence a patients’ decision about which treatment to follow or any changes to their lifestyle in order to control their illness, especially if they feel that they had brought it upon themselves.
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3) Timeline beliefs: This represents how the patient perceives his illness as regards how long it will last; acute, chronic or cyclic. People who perceive their illness to be just an acute episode generally fail to adhere to treatment and stop treatment more often than people who understand that their condition is chronic (Petrie & Weinman, 2006).
4) Treatment control: this represents how much a patient perceives his treatment to be effective, in controlling his condition. When a patient feels better after starting treatment, he is likely to adhere to treatment regime. Alternatively a patient will stop treatment if he sees no immediate effect.
5) Consequences: This encompasses, the way a patient perceives the condition will affect his life, as regards work and the social and economical aspect. The level of disability the patient perceives himself to have may not always be proportional to the severity of the symptoms of the disease. A patient who has mild symptoms of MS may give up on life whilst someone with more severe symptoms may try to get on with life to the best of his abilities.
6) Personal control: This explains the patient’s belief that he can control the disease and its symptoms. Generally, patients who look at their condition as having a short timeline, have better levels of control.
7) Emotional control: this illness representation encompasses the emotional, psychological, social and spiritual impact the illness is perceived to have on the patient’s life.
These illness representations are continually changing and evolving as the patient learns more about the condition. The parts of the puzzle (illness representations) that make up the whole picture change and therefore the coping strategies change which in turn influence the outcomes. Therefore it is important for the health professional to try and understand the patient’s perception of his illness and accepts that the patient forms his own beliefs about their illness (Scerri, Ferguson & Scerri, 2007). There may be a difference in perception regarding treatment between health professional and patient, in which case both the therapist and the patient should respect each others point of view and work towards a common goal. Patients may not be consciously aware of forming illness representations, and with careful explanation and guidance they can be helped to construct useful representations that assist in positive outcomes. There should be open communication between patient and health professional so as to decrease differences in beliefs about illness representation by understanding both perspectives, this leads to improving coping skills and thus enhanced outcomes (Scerri et al., 2007).
Patients, when faced with a positive diagnosis of MS, have to learn how to adjust and cope with their limitations in order to improve the quality of life. People cope in different ways; there are those who use assimilative coping, meaning that the patient attempts to actively solve problems, sets goals and works towards them, and accommodative coping where patients cope by changing personal goals to accommodate their perceived disabilities, accepting the situation and change their life to accommodate the disease (Brandtstadter & Renner, 1990). Others cope by avoiding acknowledging their condition and continuing with life normally. This coping style can be viewed as positive because it did not change the patient’s life style, but in the long run as the condition deteriorates, it will be harder for the patient to accept and adjust to the situation. The common sense model suggests that the choice of coping strategy is influenced by the perception of the illness threat (Leventhal, Nerenz & Steele, 1984). The patient then passes through the appraisal phase where he then evaluates if his coping strategy is working. If he sees no improvement, he may change his coping style and even change his illness perception. This can be achieved alone if the patient is a positive and active in his treatment (assimilative coping). When a patient is more negative, he needs the guidance of the health professional to change his illness perception, coping strategy to enhance his condition. The health professional can influence the patient’s quality of life by empowering him to manage and control his symptoms, adhere to treatment and encourage him to use any available resources.
Empowering patients and carers
When a patient is diagnosed with a chronic condition like multiple sclerosis, after the initial barrage of tests and hospital visits, one has to settle down and adjust to the situation of having a condition which is not curable. The course of multiple sclerosis is progressive in nature and unpredictable, going into acute phases and remissions. Therefore it is a difficult and challenging condition to live with. Empowering patients to take some responsibility towards managing their condition and symptoms can make a huge difference in a persons quality of life. This can take different forms like education, self management programmes, internet resources and fostering a good patient- health professional relationship.
Education is an important aspect for patient empowerment in any chronic disease, especially in MS because of its unpredictable nature and variety of symptoms. Knowledge enables the patient to recognise symptoms and therefore seek immediate treatment in order to control the disease. Being knowledgeable about the condition helps the patient be prepared for the inevitable progression of the disease and its ups and down. This helps the patient to be more in control of his condition and ultimately his quality of life. Educating the family and friends promotes understanding and support for the patient and minimises misunderstandings, suffering and grief. Including family and carers when educating patients about the condition ensures positive outcomes (Luzzio, 2011).
Health Professional- Patient Relationship
A good relationship with expert health professionals where the patient is encouraged to play an active role in his treatment and is guided to form an action plan for rehabilitation, is important in the early stages of the disease. The patient and health professional should discuss which problems to target first and to set goals. The patient has to be encouraged to stick to the plan of when to start, where, how, how often and for how long to achieve the set goal. Achieving this goal can be delayed due to failure to start or getting side tracked with other issues. There is a big difference between meaning to do something and actually doing it; what Gollwitzer called the “Intention- Behaviour Gap. Therefore the patient has recognised what self regulatory problem is stopping him achieving his goal and then trying to overcome this problem. This is where the health professional can help the patient to implement his action plan. Coping planning according to Sniehotta, (2005) is better implemented at a later stage in the rehabilitation and is described as mentally trying to overcome foreseen barriers to implementing action. Therefore at this stage the patient discusses with the appropriate health professional what he perceives to be barriers preventing him to implement action plan example adherence to treatment and plan coping responses to overcome these barriers. Self management needs change with time as the disease either progresses or goes into remissions. Other problems might occur to change the patient’s needs and therefore will require further self-management training. Bayliss et al. (2007) state that recent evidence shows that maintaining an ongoing relationship between healthcare professionals and patient has long term benefits.
Health care professionals should also consider the partners perception of the disease, and therefore include the family and carers in the treatment plan, medication and education when meeting with the patient. Encouraging carers and family to be involved in the treatment plan offered to the patient helps the empowerment process (Bulsara, Ward & Joske, 2004). The carer and family can encourage and support the patient to implement the actions planned and adhere to treatment. Carers or partners are believed to have an important role to play in the self-care activities of the patients (Karner, Dahlgren & Bergdahl, 2004).
Another tool to empower patients to improve quality of life, is teaching them self management skills. Patients with MS need to be able to learn self management skills and take responsibility for managing their condition (Barlow, Edwards & Turner, 2009). Self-management programmes were found to be effective in teaching self-management skills in controlling symptoms of MS like pain and fatigue by using relaxation techniques, avoiding stress, pacing oneself in executing activities so as not to overdo activities and tire oneself out. Setting appropriate goals was another aspect of the programme which encouraged patients to improve their life style and build confidence in themselves on achieving success. These small realistic successes also led to improved psychological well being. Meeting other people with MS was also considered important, as this enabled patients to share their experiences and difficulties with coping with MS and listen to other people’s ideas and problem solving methods. Downward social comparisons helped them look at their situation in a new way and encouraged them to be more positive, whilst upward comparison by observing other people coping well inspired them to strive harder. Participating in self management programmes helped people with MS feel a sense of belonging and acceptance; they derived both emotional and practical support whilst meeting others with the same problems helped ease their feelings of isolation (Barlow et al., 2009). Health professionals working with patients with MS should encourage them to attend such self management courses as they were a good source of information, self management skills, support and social contacts. “The central premise behind such programs is that day-to-day management of chronic illness rests in the hands of the patient, as opposed to medical providers, and wellness management skills are a necessary teaching focus in order to mitigate disability and improve outcomes” (White paper, CMSC, 2009). Other community based activities and associations are also a valuable means of long term support for patients with a chronic illness.
In a study by Rodham, McCabe & Blake (2009), it was also noted that people who had severe limitation in mobility made use of an internet message board in order to develop on-line friendship, seek and give both practical and emotional support and increase knowledge about their condition. Patients also shared experiences and difficulties they had experienced because of their condition and suggested ways of solving each others problems. Health professionals may recommend that their patients use the internet for education and support but they must also point out the negative effects of misleading information which might lead to unrealistic hopes and expectations. This might lead to breakdown of effective communication between health professional and patient as the health care worker tries to explain to the patient clearly and with sensitivity the reality of the situation and importance of successful participation in treatment programmes (Rodham, McCabe & Blake).
Therefore, one can conclude that when a person is diagnosed with a chronic disease such as Multiple Sclerosis, the impact on his life and that of his family is immense. It effects several aspects of a person’s life and therefore reduces his quality of life as well as that of his family and carers. When planning a programme of treatment, the healthcare professional should discuss the patient’s perceptions and beliefs about the condition and guide him to modify these illness perceptions where necessary in order to help him adjust to his new situation and function better. The treatment plan should be tailor-made for the patient’s needs and the patient motivated to involve himself in planning his treatment and in decision making; this increases adherence to treatment. It is important to include the carers in these sessions.
Empowering patients through education support through a reciprocal health professional patient relationship, encouragement to attend self-management programmes or other community based activities and self help through internet resources help them to build confidence in themselves, take control of their illness and manage themselves. This is beneficial for improving patient’s quality of life.
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