Care Provision in Long Term Conditions - Essay Example

Supporting Self Management in Breast Cancer Cases By Supervisor’s Introduction Long-term conditions can be defined as the conditions which cannot be cured but can be managed through therapy or medication. In other words, they are conditions which require response for a long time with help from a wide range of health professionals along with access to essential medicines and monitoring (Department of Health, Social Services and Public Safety 2012). Some common long term conditions are diabetes, cancer, arthritis, and asthma. Admittedly, different approaches are developed by different people in order to deal with the problem but the issue is that the system successful in one situation may not be helpful in another. This work aims to identify the effect of such a condition on the individual, their families and carers, and identify the elements of a successful strategy in which their capability of self care is promoted. The patient here is Mrs. Gladstone, a 60 year old lady with breast cancer. She is a widow, retired, and lives with her son, daughter-in-law, and two grandchildren. This patient is fictional so that it does not breach confidentiality. Mrs. Gladstone was diagnosed with stage II infiltrating ductal carcinoma. In this case, the tumor is larger than 2 cm in size and has reached the lymph nodes under the arms. Cancer in UK Macmillan Cancer Support (2013) points out that more than 500,000 people in the UK are suffering from a number of debilitating health conditions caused by cancer. Some of the problems mentioned are pain and discomfort, gastrointestinal problems, lymphoedema, chronic fatigue, and mental health issues (Cancer.Net). While the number of people living with chronic fatigue as a result of cancer is estimated at 350,000, approximately 240,000 people suffer from post-traumatic stress disorder and moderate to severe anxiety or depression. Furthermore, nearly 200,000 of the cancer-survivors face moderate to severe pain after curative treatment, and 90,000 face gastrointestinal problems. Lastly, nearly 63,000 of them suffer from lymphoedema. Additionally, there are body image issues, persistent hair loss, swallowing and speech problems, nausea and vomiting, heart diseases, fatigue, and social and financial difficulties to be addressed (Carver et al. 2006). Effect of cancer on the individual Mrs. Gladstone’s life is considerably influenced by the disease. The diagnosis of breast cancer was shocking for her. She felt too confused, powerless, and fearful because of the large number of negative effects on her life. Firstly, she was worried as she felt hot flushes and palpitations. Moreover, Mrs. Gladstone found the diseases affecting her appearance seriously because as a result of chemotherapy, she lost her hair, and the hair which grew after chemotherapy was different in colour and structure. In addition, severe pain made her life miserable. Arndt et al. (2004) reveals that both radiotherapy and chemotherapy result in nerve damage that can result in neuropathic pain. This claim is further evidenced by May and Korstjens (2009) who found that people who are diagnosed with breast, colorectal or prostate cancer feel moderate to extreme pain even after completing treatment. Moreover, there was extreme fatigue since the beginning of the treatment and Mrs. Gladstone was finding it difficult to get proper sleep. As Bower & Ganz (2006) point out, even a good night’s sleep does not reduce the fatigue caused by cancer and even simple tasks like brushing hair, showering and cooking can seem very difficult to perform. Along with these, she suffered from appetite loss, constipation, nausea and vomiting, and weight loss. In the case of Mrs. Gladstone, there were a number of emotional concerns to be addressed. First, she was worried about the fact that she would not be able to maintain independence. It was found that she used to cook, eat, and wash independently at home as her children and grandchildren were outside home throughout the day. However, the disease took a considerable degree of freedom away from her. The disease and its treatment made it difficult for her to wash, drive and cook independently. As a result of the chemotherapy and radiotherapy, she developed lymphoedema. This, in turn, limited her left hand movement. That meant serious limitations on self-dependence; no exercise, and inability to perform day-to-day activities. This fast loss of autonomy and the feeling that she would be a burden for her children made her worried and depressed. Secondly, there was an increased feeling of social isolation as she was a widow and her children and grandchildren were always busy outside home. This isolation heightened her depression and anxiety ((Barez et al. 2009). Adding to the woes, it was found that she had spiritual concerns as she was unable to be in touch with religious community. Another issue that nagged her was financial constraints. As she was a retiree, she had to depend on her children for the cancer treatment and associated costs. In addition, it was found that there were issues related to her mobility as age and medical problems limited her physical movement. Finally, transportation was another trouble as Mrs. Gladstone was no more able to drive alone. She had to depend on either her children or other forms of transportation to get to appointments in time. In total, it was observed that Mrs. Gladstone was not even willing to seek proper advice because she had great fear for cancer and she thought imminent death was inevitable. Impact of breast cancer on the family The important role of family in ensuring the wellbeing of a person suffering from a long term condition is evidenced by many studies. To illustrate, a study undertaken by Macmillan Cancer Support (2013) found that nearly 86% of the cancer patients who did not get family support during their treatment and recovery did not seek help from anyone else. While 12% reported too ill to do so, around 50% even failed to take proper meals. When one member of a family is diagnosed with a long term condition, the whole family is affected by the disease and the treatment. This is so because each member in a family has a specific role to play in the family’s everyday functioning. When one member falls ill, the whole system gets disrupted and other family members are forced to change their normal lifestyle to accommodate the change, and some of them will have to undertake the activities performed by the ill person (Lewis 2006). In addition, depending on the degree of illness, they will have to do additional tasks to help the ill family member perform their day to day activities (Forrest et al. 2006). To illustrate, in the given case, Mrs. Gladstone was totally self-dependent before the disease. She used to cook, wash, and drive. Thus, she was of help for other family members. However, the disease and its treatment brought extreme fatigue and tiredness and she is no more able to cook, wash and drive. Thus, it became necessary for other family members to prepare food for every member before they go to offices. In addition, they are made to take leaves from work on the days of hospital visits for treatment. Breast Cancer Care (2013) points out that the illness of a family member can lead to higher levels of anxiety in other members. This increased anxiety may be misinterpreted by the health professional as disinterest or reluctance to help the patient in the illness (Zarit et al. 1980). From a discussion with the family members, it was found that Mrs. Gladstone’s son was anxious about the situation. He wanted to make sure that his mother never felt neglected or isolated and he had no problem spending money for her treatment. However, he was disturbed by the frequent leaves from work as he was made to accompany Mrs. Gladstone to hospital. His wife shared almost similar feelings and experiences. She was made to undertake additional tasks including cooking and washing which her mother-in-law performed earlier. It was found that both the grandchildren were anxious about the illness and its progression. Both of them were disturbed by the way the illness affected their daily life. They said they were no more able to go on long family tours and the mood of jubilation disappeared. The children desperately wanted to get the family situation back to normalcy. Both the children identified cancer as a very rare and fatal disease that is curable only in some cases (Forrest et al. 2006). Lewis (2006) identifies that family members fail to know, understand, and respond supportively to the behavior of other family members about cancer. Effects of long term condition on the carer Connolly & O’Dowd (2001) report that carers in long term conditions are likely to suffer from feelings of loneliness and isolation especially when the health of the person cared for is declining. Mrs. Gladstone’s carer is Lucy, a 25 year old lady. As Mrs. Gladstone is in a depressed mood, Lucy finds the working atmosphere gloomy throughout the day. In addition, as all other family members stay outside home for the entire day, she gets very little chance to interact with other people. This makes her feel lonely. In addition, Connolly & O’Dowd (2001) point out that care-givers are more likely to feel low self-esteem if they feel that the consequences of the disability are out of their control or unchangeable. In addition, the problem gets worsened when the patient exhibits behavioural problems like aggression, restlessness, swearing and so on. In the given case, Lucy reports that Mrs. Gladstone goes under serious depression sometimes and that this has a serious impact on her own mood. In the opinion of Ergh et al. (2002), lack of social support and access to necessary educational support will add to the stress levels of the carers. Communication and management Studies reveal that nearly 25% of the cancer survivors say it would be helpful if they had more information on the long term physical and psychological effects. That means many of the cancer patients are either unaware or partially aware of how the disease and treatment would affect them in the long term, and this causes anxiety (Mitchell & Selmes 2007). In addition, when patients lack insight into their condition, they are more likely to discontinue medication and show no concordance. Moreover, it is found that some predictors of discontinuation are complexity of the regimen, duration of the course, and frequency of the follow up contact. Lack of informal support is one reason behind lack of concordance. Some other reasons are concerns about side-effects, lack of knowledge about the benefits, stigma of taking medication, difficulty managing daily routine, cost concerns and dislike to be dependent on others (Barber et al. 2004). Admittedly, it is for the care provider to handle many of these issues through effective communication. Moreover, the study by Garfield, Francis & Smith (2004) points out that issues like poor carer-patient relationship, poor empathy, poor explanation and communication, and insufficient follow-up are reasons behind poor patient adherence to treatment plan. In fact, this carer-patient communication has an essential role in identifying the needs of the patient (Corner & Bailey 2009). This claim gains importance because Chung & Cimprich (2009) points out that patients from different cultures have different needs and different perceived barriers. Furthermore, people like Coulter & Ellins (2006), Davies & Batehup (2009), and Giesler et al. (2005) identify patient-nurse (carer) communication as an important element in developing a patient-centered treatment approach. Role of self-management Self-management can be defined as enabling people to manage their own health with proper support when necessary. Admittedly, it is a patient-centered approach where it is necessary to provide the skills and knowledge as and when required because the patient is considerably involved in planning and decision-making (Department of Health 2005). Self-care plans usually include rehabilitation and patient education programmes (Foster & Brown 2007). According to Department of Health, Social Services and Public Safety (2012), self care helps people maintain their overall health, at the same time reducing hospital admissions and GP attendances. A look into the various self management support approaches will prove that they heavily depend on the social learning theory of Bandura. According to the theory, the behaviour of a person is considerably influenced by personal factors like cognitive, affective and biological events and environmental factors and vice versa (Bandura 1977). Based on this theory, most of the approaches tend to utilise the power of peer group influence and observation in changing perceptions. For example, Cohen & Wills (1985) identifies that social support can act as a buffer in controlling stress. Similar results have been obtained in Figheiredo et al. (2004) and supported in Hoffman et al. (2013). Self management in breast cancer The study by Foster et al., (2009) identifies the components of cancer survival self-management. The various sources of self-management support are healthcare workers, families, friends, networking with other cancer survivors, and organised support. As already identified in this study, the problems during and after cancer treatment are abandonment, lack of information, lack of support, emotional issues, difficulty forming relationships, and physical problems. Out of these problems, Foster et al. (2009) suggest that in order to manage the psychological problems, the strategies to be adopted are altering outlooks, managing emotions and improving self resourcefulness. Similarly, to handle social problems, there is proactive socialising, sharing experiences, and managing finance (Kok & Schaalma 2004). Finally, physical problems can be solved through simple and complex strategies. Adjustment-focused and problem-focused self-management support Psychosocial intervention has been proved very effective in long term conditions by scholars. Some examples are Chow et al. (2004), and Graves & Andrykowski (2007). One strategy as suggested by Stanton et al. (2004) is Psycho-Educational Counselling. This involves counseling with trained cancer educators, including one 80 minute face-to-face communication and a 30-minuite telephone session two weeks later, along with a peer-modelling videotape named Moving Beyond Cancer. The study revealed a decrease in cancer-specific distress and depressive symptoms. Similarly, there is the Taking CHARGE Programme as suggested by Cimprich et al. (2005). The acronym “CHARGE” stands for Choose a concern, Have the information, Assess the situation, Record the plan, Gain confidence and insight, and Evaluate progress. Based on Bandura’s social cognitive theory, the programme consisted of four group sessions at two week intervals. While two of them were professionally-led face-to-face group sessions, the remaining two were telephone sessions. While the face-to-face sessions aimed to develop the feeling of self-efficacy and to reduce the fear of recurrence, the telephone sessions aimed to develop self-management skills in dealing with fatigue, lymphoedema, cognitive problems, and to enable the patients to adopt strategies of exercise and proper diet. The study revealed considerable improvement in the quality of life of the participants. From the analysis, it becomes evident that the key components of self-management support remain the same in all the studies; offering necessary information, chance to share with peers, help from healthcare professionals, and enhancement of self-management skills. Similarly, there are problem-focused self-management support programmes. For example, Damush, Perkins, and Miller (2006) report a three-weekly oncologist referred exercise programme. The exercise took one hour at a time and focused on improving exercise self-efficacy and enjoyment of physical activity. Along with this, the participants received 15-minute follow up telephone calls. It was found that in six months, there was significant improvement in self-efficacy, enjoyment of physical activity, and a fall in perceived barriers. For the family, it is necessary to get included in the decision-making process. It will make them understand the changing situation and cope accordingly (Grazin 2009). In addition, this will make the patient feel cared for by the family members. Finally, for the carer, it is necessary to have social support and access to necessary education as and when required. Conclusion In total, it becomes evident that the self management support in breast cancer should aim at proving sufficient information about the disease and its long term effects, and enabling interaction with people with similar problems. 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