Experience of illness and disability - Essay Example

Experience of illness and disability – Case study [2] The principles and the standards applied in care have to be differentiated in accordance with the needs of the patients but also the type of the specific medical problem. Moreover, when the illness is chronic then the behaviour of both the doctor and the patient has to follow specific guidelines in order for the problem to be handled effectively. There are also certain ethical dimensions and dilemmas that have been examined thoroughly mostly in the field of bioethics. In this context, we should refer to Callahan et al. (1998, 2) who stated that ‘chronic illness is not only a social issue that must be addressed, it is also a poignant and perplexing facet of the human condition where fresh insight can be sought; meeting the needs of those with chronic illness, and treating them with justice and dignity as full-fledged members of the moral community, will tax our common energies, the public purse, and our moral imagination’. It has also be found that ‘the treatment of chronic illnesses has decreased the level of disability over the past century while the rate of decreases in disability levels seems to have accelerated since the 1980s; antibiotics and anti-inflammatory drugs that treat rheumatic fever, typhoid, and emphysema have reduced the number of individuals with chronic heart disease, circulatory illness, and pulmonary disease; however, even with falling disability levels and increased use of new technologies, we can expect the number of individuals needing both institutional and noninstitutional long-term care to rise’ (Long et al., 2002, 237). It should also be noticed that although there are many social and ethical dimensions referring especially to chronic illness, the effectiveness of the methods used for its treatment is many times related more with the behaviour and the personal strength of the specific patient while the role of the medical staff is most commonly supportive and secondary. In the particular case, the event that should be considered as having the major responsibility for Scott’s illness is the death of his wife. After this event, Scott was mainly focused on his job trying to achieve a high rate of profitability for his salon in order for his daughter to have the necessary financial resources for the future. Although this behaviour is absolutely justified, it could be criticized however as not revealing Scott’s true feelings and therefore to enhance the creation and the development of the illness. In any case, it seems that the environment of Scott should have paid particular attention to the consequences of Tina’s death not only to Jade but also to Scott offering to both of them the necessary psychological support. This assumption is also supported by Flora et al. (1995) who believe that events can have a major role in the formulation of a person’s behaviour and the cause of illness. More specifically, the above researchers refer to the work of Overskeid (1994) who argues that ‘for behavior analysis to be consistent, in both data and theory, private events (events occurring inside an individuals skin) are acceptable causes, including initiating causes, of behavior while cognitions (thoughts) are completely acceptable as initiating causes of behavior in behavior analysis; private events may be intermediate causes of behavior in behavioral chains, thoughts, feelings, and so forth, are never initiating causes of behavior’ (Flora et al., 1995, 577). On the other hand, it could be stated that the role of each event to the formulation of a specific behaviour and the cause of illness cannot be identified with accuracy mostly because the conditions of the life do not permit such a connection to be developed independently as there are always several factors that tend to influence a person’s behaviour (family, friends, job, personal attitudes, past experiences etc.). For this reason, Flora et al. (1995) state that ‘we cannot be sure that physiological facts explain behavior until behavior has been exhaustively analyzed; a successful independent experimental analysis of behavior is a necessary half of any "physiological explanation." . . . while a behavioral analysis is essentially a statement of the facts to be explained by studying the nervous system; it tells the physiologist what to look for while the converse does not hold; we can predict and control behavior without knowing how our independent variables are connected’ (Flora et al., 1995, 582). According to Royer (1998, 41) ‘the course of events is unpredictable in chronic illness, in which remissions and exacerbations occur; In fact, chronic illness has been described by Wiener (1975) as an experience of living with chronic uncertainty; Uncertainty does not represent the total experience of chronic illness, yet it is a constant and most problematic part of it; Thus, the concept of uncertainty must be addressed in order to understand the problematic nature of chronic illnesses. Uncertainty, is defined as the inability to determine the meaning of events, occurs in a situation where the decision-maker is unable to assign definite values to objects and events and/or is unable to predict outcomes accurately’. The above assumption verifies the views of Holmes (1989) who found that in cases of disability there is a directly relationship between the development of the treatment and the psychological condition of patient. On the other hand it has been supported by Maddox and Glass (1989) that ‘chronic illnesses are characterized by low "specificity," meaning the absence of definitive etiology, natural course, and distinct interventions; They are also often categorized as having an "ambiguous identity," that is, unlike acute illnesses, the symptoms of chronic conditions may be nonspecific, intermittent, and thus difficult to identify’ (Royer, 1998, 19). It seems therefore that the elements used for the analysis of a person’s behaviour are not standard but they tend to be differentiated in accordance with a series of parameters (as explained above) which have to be taken into account when conducting an evaluation of a person’s behaviour and the role of the latter (as caused by specific events but as it has also been influenced by the environment) to the illness caused to the particular person (either after a long or short time period). On the other hand, it seems Scott had not the necessary support not only from his environment but neither from a specialized consultant. In fact, Scott did not ask for such a support after the death of Tina but just tried to focus on work trying to make sure that Jade would have all the necessary resources for the development of her career in the future. As for him, he didn’t ask for medical help believing that work could offer him all the help needed to confront the death of his wife but this was proved not to be true. The role and the importance of social support were thoroughly examined by Kelly et al. (1999) who focused especially in the role of this support to the Chronic Fatigue Syndrome (CFS), an illness that can also be considered by many people as a common and easy to be faced condition. Regarding specifically this Syndrome social support was proved as having the power ‘to affect illness outcome in medical disorders, likely due in part to communication between patient and support giver on illness-related concerns: forty-one participants, 25 of whom had a primary support giver, completed the Beck Depression Inventory, the Perceived Stress Scale, the Profile of Mood States, and the Inventory of Socially Supportive Behaviors (ISSB); the primary support giver completed a modified version of the ISSB indicating the level of support he or she provided and a questionnaire assessing beliefs about CFS; results indicated that there were no differences among individuals with CFS with or without support on measures of mood and perceived stress while individuals with CFS and their support givers agreed on the amount of support offered, and extent of support was independent of beliefs concerning etiology’ (Kelly et al., 1999, 21). In other words in the case of CFS the relationship between the social support and the patient’s condition does not seem to be direct however it has been proved to be overall important for the completion of the treatment effectively. It seems therefore that the results of provision of social support are more likely to be identifiable after a long period of time rather instantly. From another point of view Czuchta et al. (1998) tried to measure the influence of the ‘self’ in the improvement of a person’s medical condition. For this reason they present the work of Davidson and Strauss (1992), who ‘collected data from 66 people who had been hospitalized for severe mental disorders; semi-structured, interviews were conducted with each participant over a period of 2 to 3 years; the interviews focused on the participants past and recent experiences with respect to work and social relations, symptoms, treatment, living situation, and coping efforts; the data were examined to explore ways in which the sense of self might have been a factor in improvement; the researchers concluded that the recovery, process indeed involved the rediscovery, reconstruction, and use of a more functional sense of self’ (Czuchta et al., 1998, 32). It has been proved therefore that the role of ‘shelf’ to the development of illness is crucial. However, because the above study refers especially to persons with mental illness it could be argued that ‘shelf’ does not have an equal influence on all types of illness but it tends to be more intensive in patients that suffer from a mental disorder. On the other hand, illness is always connected with a person’s psychological condition either directly or indirectly. In this sense, in every type of illness ‘shelf’ could be considered as having a major role to the success of the treatment applied. In case of Scott, ‘shelf’ should be regarded as having a crucial ‘participation’ on the development of the specific illness (rheumatoid arthritis, R.A.). The facts presented in the specific case prove that Scott pressured himself to forget the death of his wife however his efforts were failed as proved by the gradual development of this illness (R.A.). Scott should have pay more attention to himself and he should have confronted the death of his wife directly and immediately after the event instead of trying to use work as an alternative support (it can be but it is not always successful when using under conditions of strong psychological pressure). Recommendations The level of medical support offered today is extremely high. In fact it has been found by Harter (2004, 48) that ‘the nature of medical practice has changed over the past two decades: managed care has replaced fee-for-service medical reimbursement; hospital stays are shorter; solo practice has all but disappeared in urban areas; "alternative" forms of health care are experiencing a resurgence; consumer ideologies have led to increased accountability of providers for their practice behaviors, clinical outcomes of the care they provide, and the satisfaction of patients and families’. In the case of Scott, the options for medical support were many. This support refers to the one that should be given to Scott after his wife’s death (from a psychological point of view) and not to the one which is necessary to Scott after the development of R.A. to him. If Scott would have sought for support after the death of Tina, then it could have probably prevented the appearance and the development of this illness. It should be also noticed that ‘when it first appears, chronic illness may seem like an unwelcome intruder, but eventually it becomes a part of oneself, still unwelcome, with which one must learn to live as best one can; in the years ahead chronic illness will enter the lives of more and more people--children and young adults who survive conditions once fatal in the first few months or years of life, and those over sixty-five who survive or avoid the acute illnesses of middle age’ (Callahan et al., 1998, 4). In other words the appearance of a chronic illness mostly at its early stages can give a false impression regarding the person’s health hiding sometimes certain of the symptoms that could probably help to the authentic evaluation of the patient’s condition. The role of medical staff in the diagnosis and the treatment of illness is always crucial. For this reason, Czuchta et al. (1998, 31) stated that ‘nurses can help patients who have undergone a loss of self to discover a more active sense of self, take stock of the self, put the self into action, and use the enhanced self as a refuge; this process involves the fostering of hope’ (Czuchta et al., 1998, 31). Regarding especially the role of counsellors in cases of persons that suffer from a chronic illness and disability Antonak et al. (2005, 14) found that ‘when working with individuals who have sustained CID, counselors are commonly called to draw on their expertise in the areas of(a) stress, crisis, and coping with loss and grief; (b) the impact of traumatic events on self-concept, body image, and quality of life; and (c) the effects of disability-linked factors (e.g., uncertainty, unpredictability) and societal reactions (e.g., stigma, prejudice) on psychosocial adaptation to CID. Counselors must also be cognizant of, and demonstrate clinical acumen when observing, clients psychosocial reactions to their conditions and the external environment’. In the particular case, Scott should cooperate with the consultant closely in order to prevent the development of the specific illness. This cooperation should be continuous and intensive and for this reason Scott should put as a priority his treatment instead of work, an opposite direction from the one he used to follow in the past, i.e. first the work and after the personal health. In his case, Scott seems as having also the responsibility for the development of the illness because he did not ask for medical help except after the pressure made to him by one of his employees, Tiffany, who actually was the person persuaded him to seek for medical assistance. Under all circumstances Scott would have a major role in the formulation and the development of the method of treatment that would be followed in his case. Parker (1999, 43) stated that ‘according to the accepted principles of medical ethics, the patient is to be the ultimate judge of the benefits and burdens of life-extending treatment while the right to make such judgements rests on the principle of patient self-determination’. In the particular case, Scott seems actually to have an extensive participation on the design and the patterns of the treatment followed for the confrontation of R.A. Moreover, he seems to decide on following more healthy methods of treatment in an effort to avoid the possible negative effects of an extended use of drugs. This active participation of Scott in the design and the application of the specific treatment should be considered also as having a crucial role on the confrontation of the real source of illness, the stress caused by the death of his wife. As for the behaviour of the environment towards the disability caused to Scott this should not be regarded as a problem as the trends and the standards of the society regarding this issue have changed at a high level the last years mostly due to the high number of people that suffer from some kind of disability either for a short term or permanently. In this context, it has been found by Long et al. (2002, 41) that ‘a number of factors, including broader sociopolitical trends, court decisions, and technological developments over the past three decades, have led to the ability of increasing numbers of persons with disabilities, chronic illness, and special needs to remain in the community and out of institutional care settings; the result is a growing population of community-dwelling persons needing a complex mix of medical and social services to maintain their health and functioning’. For the above reasons, Scott should not worry about the differentiations in his environment’s behaviour towards him as it is more likely that these differentiations will be minor. In order to examine the relationship between the social support and the development of a chronic illness especially to persons with disability problem, Elliott et al. (1995, 471) tested for ‘mediating effects of depression on the association between social support and leisure activities among men with severe physical disabilities; measures of social support, depression, and leisure activities were administered to men receiving services at a spinal-cord-injury unit in a Veterans Administration Medical Center; path analysis revealed depression and attachment support to be directly predictive of leisure activities; however, support that reassured the worth of the individual was related to leisure activities only when depression was taken into account’. The valuation of the role of social support in the case of a person that faces a severe disability problem could be therefore regarded as not totally accurate but it is rather depended on the conditions related with the particular person’s environment and not totally with the medical or social support offered to the person involved. However, an issue that may arises is the impact of Scott’s disability on Jane. In this context, it has been found in the literature that ‘the severity of chronic illness is sometimes related to family functioning by increasing the impact (limitations or demands imposed by physical illness) of the illness, which, in turn, increases (1) the number of depressive symptoms experienced by each parent, (2) dyadic maladjustment, and (3) difficulties in the parent/child relationships’ (Armistead, 1997, 84). More specifically, after examining ‘the association between parental chronic illness and child functioning it has been tentatively concluded that differences in some areas of functioning typically are reported; however, these differences are small and children usually are functioning within the normal range on child outcome measures’ (Armistead, 1997, 85). In the specific case, Jane’s behaviour after her mother’s death proves that she has all the necessary personal strength to offer her father the psychological support in order for him to face the illness effectively. For this reason, there should be no worries for the impact of Scott’s illness to her daily functioning. Of course, there will be an emotional involvement and stress but these will be limited and the family will function normally towards the confrontation of the specific illness without this activity to harm Jane’s personal development. Conclusion Generally, it could be stated that ‘recognizing the multifaceted psychological, social, and ethical, as well as medical reality of chronic illness is only the first step; we still lack an adequate understanding of the meaning and ethical implications of chronic illness in the lives of individuals, families, and the broader society; and we lack as well a serviceable vocabulary of concepts and categories with which to address its meaning and implications’ (Callahan et al., 1998, 6). From a similar point of view Antonak et al. (2005, 13) stated that ‘many disability- and nondisability-related factors interact to create a profound effect on the lives of individuals with chronic illness and disabilities (CID); Among these, the most commonly recognized factors include the degree of functional limitations, interference with the ability to perform daily activities and life roles, uncertain prognosis, the prolonged course of medical treatment and rehabilitation interventions, the psychosocial stress associated with the incurred trauma or disease process itself, the impact on family and friends, and the sustained financial losses (e.g., reduced income, increased medical bills)’. For the above reason any criticism made on Scott’s behaviour after the death of his wife can be only under a personal evaluation of the situation and as an ‘observer’ of the events taking place during Scott’s life. However, from an ‘objective’ view of the whole situation, the general assumption can be that Scott ‘left’ himself abandoned after the death of his wife. His only interest was the salon in an effort to make sure that Jade will have in the future all the necessary resources to make her dreams real. However, this behaviour could be considered as an acceptance from Scott of the fact that he may not be present when Jade will grown up and for this reason he tries to make sure that she will be financially autonomous in the future. Moreover, such an aspect reveals Scotts real thoughts after his wife’s death which are characterized by the lack of interest for life by Scott’s side after the loss he suffered. His life seemed to have no particular interest for him. However, after the appearance of R.A. Scott seemed to have re-think all his thoughts. His efforts to prevent the development of this illness prove that Scott has re-evaluated his aspects for life as they have been formulated under the pressure caused by his wife’s death. The simultaneous confrontation of Tina’s death with the help of a specialized consultant proves exactly the restructuring of Scott’s view of life as it has been emerged through the appearance of a severe illness. In his case, the appearance of R.A. could be regarded even as having certain positive effects to the patient’s life. References Antonak, R., Liyneh, H. (2005) Psychosocial Adaptation to Chronic Illness and Disability: A Primer for Counselors. Journal of Counseling and Development, 83(1): 12-17 Callahan, D., Ca-Lan, A., Jennings, B. (1988) Ethical Challenges of Chronic Illness. The Hastings Center Report, 18(1): 1-19 Costa, D. (2000). Long-term declines in disability among older men: Medical care, public health and occupational changes (National Bureau of Economic Research [NBER] Working Paper 7605). Cambridge, MA: NBER. Czuchta, D., Johnson, B. (1998) Reconstructing a Sense of Self in Patients with Chronic Mental Illness. Perspectives in Psychiatric Care, 34(3): 31-37 Elliott, T., Shewchuk, R. (1995) Social Support and Leisure Activities Following Severe Physical Disability: Testing the Mediating Effects of Depression. Basic and Applied Social Psychology, 16(4): 471-489 Flora, S., Kestner, J. (1995) Thoughts, Private Events, Etc., Are Never Initiating Causes of Behavior: Reply to Overskeid. The Psychological Record, 45(4): 577-586 Haber L. D., Smith, R. (1971) ‘Disability and Deviance: Normative Adaptations of Role Behavior’ American Sociological Review, 36:87-97 Harter, L., Kirby, E. (2004) Socializing Medical Students in an Era of Managed Care: The Ideological Significance of Standardized and Virtual Patients Communication Studies, 55(1): 48-67 Holmes C. A. (1989) ‘Health Care and the Quality of Life: A Review’ Journal of Advanced Nursing, 14:833-39 Kelly, K., McGarrahan, A., Soderlund, K. (1999) Social Support and Chronic Fatigue Syndrome. Health Communication, 11(1): 21 Link, B.G., Phelan, J.C. (1999). Public conceptions of mental illness: Labels, causes, dangerousness, and social distance. American Journal of Public Health, 89: 1328-1336. Long, L., Sciegai, M., Wallack, S. (2002) Short- and Intermediate-Term Trends Affecting Medicaid Policy for Persons with Disability, Chronic Illness and Special Needs. Journal of Disability Policy Studies, 12(4): 236-245 Maddox G. L., Glass, T. A. (1989) ‘Health Care of the Chronically Ill’ In Handbook of Medical Sociology, 3rd ed., ed. H. Freeman , S. Levine, and L. Reeder. 475-504. Englewood Cliffs, NJ: Prentice Hall Manton, K. C., Carder, L., Stallard, E. (1997). Chronic disability trends in elderly United States population: 1982-1994. Proceedings of the National Academy of Sciences, 94: 2593-2598. Parker, M. (1999) Ethics and Community in the Health Care Professions. London: Routledge Royer, A. (1998) ‘Life with Chronic Illness: Social and Psychological Dimensions’ Westport: Praeger Publishers Socall, D.W., Holtgraves, T. (1992). Attitudes toward the mentally ill: The effects of label and beliefs. The Sociology Quarterly, 33: 435-445. Armistead, L., Forehand, R., Steele, R. (1997) The Role of Family Processes and Coping Strategies in the Relationship between Parenteral Chronic Illness and Childhood Internalizing Problems. Journal of Abnormal Child Psychology, 25(2): 83-93 Read More