Health Conditions of People Experiencing Disability - Case Study Example

Concepts of Disability Interaction Between Health Conditions, Environmental and Personal Factors in the Lives of People Experiencing Disability 28 December 2009 Introduction This report is a simulation that aims to provide some insights on the experience of people with multiple sclerosis. It starts with a statement of the case study, delves into the effects of the multiple sclerosis to patients and family before identifying organizations that offer support to such patients. It further provides an illustration of a typical day for a person suffering form the disability, and examines various challenges that face victims of multiple sclerosis. Section A: Choosing a case study I am a 35 year old female living in Roma in Western Queensland. I live with my husband and two school-age children. My home is of split-level design such that it contains a one-level section and a two-story section. The bedroom and bathroom are on the upper level of the two-story section, while the living room and dining room are on the one-level section. There are toilets located in all level of the house. One set of stairs lead to the upper level, while the other connects to the lower level. A garage is located in the in the basement. This home presents some challenges to my condition of multiple sclerosis, although some changes can be made to make it easier for me to live in it. Section B: Disability awareness The effects of multiple sclerosis (MS) on my body, including my day to day functioning have been great. I have experienced changes in sensation such as tingling and pricking that has spread into numbness of some areas of the body including my upper back and groin. I get an electrical sensation when I bend my neck. My sense of touch has reduced, a situation that has been made worse by feeling of weakness, stiffness, spasms, tremor, and paralysis in the body muscles. I have difficulties coordinating my legs and arms, and I have also suffered loss of balance in the body muscles and posture. My bowel and bladder have had dysfunctions, while my vision has become blurred and I sometime experience pain in the eyes. My speech is becoming slurred, while my cognitive capability has progressively been declining such that my thinking, reasoning and remembering ability has deteriorated drastically. Besides these experience, depression has also crowded my life. I am glad, however, that there are a number of international, national, state and local organizations and services that can offer support to people with multiple sclerosis. These organizations include Health Direct Australia, and Multiple Sclerosis Society of Australia or simply MS Australia. Health Direct Australia is a free service offered to people with multiple sclerosis on a 24-hour basis and can provide advice through the telephone. It is available to various territories in Australia including Northern Territory, Tasmania, New South Wales, Australian Capital Territory (ACT), Western Australia, and South Australia. Multiple Sclerosis Australia offers support and help to people with MS including their families and friends in Australia. It has a widespread network of branches, centres, health service and support groups and implements its agenda through its state-based societies. These societies are distributed as branches in Australian Capital Territory, New South Wales and Victoria; Queensland; South Australia and Northern Territory; Tasmania; and Western Australia. This organization can provides information and support by phone, through its centres, and on its website. The organization is managed and operated by Multiple Sclerosis Limited. Multiple Sclerosis Western Australia can help me manage my daily activities of living through its domiciliary nursing and respite services. The society provides nursing care to people in Western Australia in their homes. It also has accommodation facilities such as Fern River that provide dedicated nursing care to people with Multiple Sclerosis. It is advantageous that I can receive care at home especially that I am a mother and would wish to be close to my family. Its 24-hour respite services are equally beneficial because I could opt to stay at their facilities when my family has travelled. Moreover, I could benefit from its counselling services, especially in regards to my relationship with family and career; it is even better that this program caters for friends and family, and is free. Its support groups, which provides a guest speaker to address MS issues are also helpful as is its immunotherapy program. There are several possible effects of the multiple sclerosis experience on the family unit. Power and Orto (2004, p 237) have noted that an illness or a serious disability can lead to, or aggravate a family crisis. Out of the feeling of loss, the family could be overcome by various emotions such as grief, resentment, depression, sadness, and anger (Power and Orto 2004, p 237). This could lead to loss of career and employment, and worsen the financial situation of the family. The “feelings of loss” and “pain of grief” can prevent the family from coping with the situation and interfere with the management of both my personal and family issues (Power and Orto 2004, p 237). For instance, it would be difficult to give my husband and my two children the attention and care they expect from a mother, which could lead to other problems. It is likely that this situation could lead to pressure in my sexual relationship with my husband (Multiple Sclerosis Society of Canada 2008, p. 40), and contribute to an eventual divorce scenario. The condition could also mount pressure to my husband and relative who might feel obliged to assist me in my day to day activities. Romanoff (1993) advices that a situation of disability can invoke a state of intricate interaction of physiological, behavioural, emotional, cognitive, and spiritual responses. Section C : Daily living Time/Activity Ease of doing an activity or participating (0-4) 0= no difficulty 4= complete difficulty. Barriers or Facilitators I have encountered My solution(s) to overcome the barriers Approximate financial cost to me 6am: Getting out of bed 2.5 No railing or grab bars for support Electric automatic bed and installation of grab bars would be helpful AUD 1,500 6.10am: making the bed 2.5 Lack of enough space for wheelchair Place bed away from the walls - 6.20am: Going to the toilet 2.5 Grab bars for support Use a raised toilet, Install grab bars, and toilet transfer bench - 6.50am: Taking a shower 3 There are grab bars in the bathroom, no transfer aids Installation of bathtub transfer bench, and use of hand-held shower - 7am Dressing 2.5 No suitable mirrors Use magnifying mirrors - 7.30am: Going down stairs 4 No wheel chair ramps Install handrails, and moving electric wheel chair ramps - 7:40am: Taking break first 2 Suitable tables are available - 8am: Boarding on a bus on my wheelchair 4 No wheel chair ramps Use automatic wheel chair, and install ramps on buses - 8.30: Working 3 Blinding lighting Use non-glare lighting, use magnifying spectacles - 1pm: Taking meals 2 Suitable tables are available, pain Use pain killers - 4pm: Driving my car 4 No driver Employ a driver - 4.30pm: Shopping 3 No wheel chair ramps in supermarket Install wheel chair ramps in shopping centres and building - 5pm: Hang washing 3 No washing aid Use washing machine - 6pm: Doing Yoga 2.5 Lack of trainer Employ a personal trainer - 7pm:Going up stairs 4 No wheel chair ramps Install handrails, and moving electric wheel chair ramps - 7.30pm: Reading a book 3 Blinding lighting, small font size text Use non-glare lighting, use magnifying spectacles - - Section D : Challenges a) Social restrictions Multiple sclerosis has contributed to various social restrictions. It has contributed to a drastic change of my lifestyle. Feeling of fatigue after short exercises and activities has contributed to my reduced engagement in vigorous activities. Occasional cases of relapses have also caused embarrassment and discouraged my participation in recreational and open space activities. In fact, nowadays I spend more time resting indoor, which was uncharacteristic of me. Although I still satisfy my interests of touring, picnicking and visits to art galleries, the experience is not the same as before, and it is a challenge because of my reduced vision, hearing ability, and mobility. It has also been extremely difficult to maintain my sexual relationship with my husband. The combination of depression, grief, and other emotions have really affected my desire to engage in sexual relationship (Multiple Sclerosis Society of Canada 2008, p. 40). It has also difficult to keep the family together, more so, in regard to my two teenage children who have been adversely affected by my situation. Their peers have sometime laughed at them and viewed them as inadequate because of my condition. This has led further to negative feeling that have affected their participation in class and extra-curriculum activities in school. The problem has aggravated to a scenario where my children do not listen to me anymore and prefer to do their own things. The problem is compounded by the fact that it is hard to cook for my family or do any house work. In fact, it the family, friends and other relatives who do the work for me. My relationships with friends and colleagues at work has been affected, and I have even lost most of my friends. I am not able to maintain friends who were attached to me because of my humour and ability in coordinating people. I have had to terminate my membership in some association so as to focus my finances and time on my medication and care, and that has stripped my various benefits and privileges. Furthermore, my participation has been affected by lack of self esteem and confidence, inability to interact with people, and embarrassment that I suffer due to relapses. Worse still, I had to surrender my position as the leader of a women association I helped establish because members felt I was challenged to lead. It is now difficult to further my political ambition with the condition. It would not be easy to convince people that I am capable to lead them, while they know that my cognitive abilities may have been affected by the condition. I would also face great challenge because politics requires an ability to undertake multiple tasks, and it often requires financial commitment. b) Community and environmental challenges Living with multiple sclerosis has presented a number of community and environmental challenges to me. It has been very difficult for me to carry out my duties at work, in churches, and in community organizations because of the physical challenges and bad attitude of the people. However, I have had to relinquish my leadership roles and other responsibilities in community organizations and in the church. I have also stood strong to criticism at work, although I have had to use various aids in discharging my duties. Moreover, since I have to use a wheelchair, accessibility of various facilities such as the train, buses, and buildings has been a problem. I have had to make private arrangements for transportation and assistance. Some people in the community, especially the teenagers and some financial institution, have a very bad attitude towards my condition and often undermines my rights as a citizen. There are some changes in my life that are essential now that I am diagnosed with multiple sclerosis. One is switching from strenuous activities to ones that allow my body to exercise without exerting fatigue. I would improve my diet, and avoid consumption of alcohol or other substances that interfere with my cognition. Rather than give up on my sporting interest, I would participate under the category of people with disabilities. This would necessitate that I adopt a positive attitude and lifestyle, which I could strengthen by joining associations or groups that support people with multiple sclerosis disability. . Community and environmental changes are also essential in promoting my participation in the community. Establishing disability aids would be very valuable to me. My mobility and accessibility of various facilities would be greatly enhanced by installation of wheel chair rumps in building and other crucial areas such as train and bus terminus, and in airports. Such an aid should also be incorporated in public and institution buses. Design changes in my home such as bath aids, wide doors, raised toilet with grab bars, wheel chair rumps would offer valuable facilitation. These aspects should also be incorporated in facilities that are accessible to the public. It would also be helpful to me emotionally and in many other aspects if the community adopted a positive attitude towards people with multiple sclerosis. Other than viewing such people as a burden it would be beneficial for the community to support us so that we are able to perform various task. For instance, employers should not dismiss an employee just because he or she has the disability, but rather should try to support the person to perform his or her tasks adequately. In cases where an individual has suffered severe disability the community should also offer support. c) Reaction to multiple sclerosis from the perspective of self concept, body image and self-esteem My reaction to multiple sclerosis from the perspective of self concept, body image and self-esteem would be profound. One potential reaction would be great shock and grief out of the possibility of loosing my cognitive ability and becoming physically handicapped. I would possibly be crowded with the thoughts of how my peers would think of me and how the society would react. It would be unimaginable to have a slow down on my abilities and that fact might lead to a behaviour of concealment. The condition might also prompt me to think that I am not worthy in the society, at work place, and as a mother and wife out of the perceptions that my cognitive and physical abilities have been affected. It is possible to think that I am ugly or my outlook is not appropriate out of the bare fact that I suffer from multiple sclerosis. As a result, this could potentially lower my confidence and effectiveness in interacting with people. I could also suffer from the obsession of trying to enhance my physical appearance. Moreover, I might become vulnerable to some situations, and often get embarrassed from occurrences that I ought not to be embarrassed about. I would also possibly experience a moment of denial to the fact that I suffer from the condition and try to hide the truth (Bury 2005, p.70). It is likely that I would try to initially conceal the ailment from my employer in fear of loosing my employment as well as from colleagues and friends for fear of loosing my social status. Although maybe I would eventually accept my situation and try to adopt to it, I believe it would not be an easy and sudden. Even with this acceptance, possibly my decisions might be hasty and unrealistic such that the results are damaging. For instance, it is possible to seek solutions such as plastic surgery under the believe that I need to enhance my physical appearance. I could also be attempted take alternative treatment or seek alternative doctors that promise to deliver according to my expectations, even when the expectations are not realistic. I might become overly vulnerable to sources that seem to offer support to people with multiple sclerosis, and maybe end up being duped. Possibly, my self esteem would go down and develop difficulties adopting to the society. It is possible that I would find it difficult to interact with people, especially my peers, or even try to avoid people. I could also suffer from inferiority complex and find myself submitting to demands that I would not have previously submitted to. This low esteem could possibly degrade my social status, and contribute to a perception that being neglected out of my condition is okay. d) The concepts of pity, paternalism, self efficacy and independence The concepts of pity, paternalism, self efficacy and independence are relevant in discussions relating to rehabilitation and treatment of people with disability by health care professionals. It is common for health care professionals to feel pity for persons they are giving care to (Davis 2005, p83). Pity evokes a somewhat disdainful empathy for people in pain. Several literatures have concurred that pity is not appropriate for a healing process (Davis 2004, p9; Davis 2005, p83; Nietzsche 1990, p. 609; Thiele 1990, p. 154). It makes a person to feel the loss in a manner that is not appropriate. It is harmful (Davis 2004, p. 9) in the sense that it promotes an attitude that “depersonalizes” the patient. Nietzsche (1990, p. 608) views it as contagious. Feeling pity for patient should therefore be avoided by health care professionals while treating people with multiple sclerosis. While health care givers are required to be professionals, and avoid actions that make patients feel dehumanize, otherwise, it becomes a challenge to people suffering from multiple sclerosis and other disabilities. Paternalism, on the other hand, refers to “the interference of a state or an individual with another person, against their will, and justified by a claim that the person interfered with will be better off or protected from harm” (Stanford Encyclopaedia of Philosophy 2002). This concept is controversial and can be both beneficial and limiting to a patient. Some statutes legitimize paternalism and this is a challenge to people with disability including multiple sclerosis patients. While it may be sometime essential to practice paternalism to patients, this provision should be clearly defined in statutes to guide health care professionals and avoid a scenario of infringing the rights of disable persons. Employing paternalism during rehabilitation and treatment means that patients could be compelled to accept certain course of action against their will. Paternalism can refer to the opposite of being independent. Patients with disability can face the challenge of independence during their rehabilitation and treatment. Health care institutions and professionals should however appreciate the importance of independence to such group of people (Orto & Power 2007). Patients should be allowed to make choices (Stanford Encyclopaedia of Philosophy 2002). Self-efficacy in both the patient and health care professional is vital during rehabilitation and treatment. For the health care professional it necessary in promoting their performance. Bandura (1994) affirms that self-efficacy is an integral component of human accomplishments. Since treating and rehabilitating multiple sclerosis patient can be challenging, it is essential that health care professional adopt an attitude of being able to succeed. To the patients it can be offer hope for recovery and wellbeing. Weiner, et al. (2003) highlights that self-efficacy is important for patients in their recovery process. Reference list Bandura, A 1994, Self-efficacy. In V. S. Ramachaudran (Ed.), Encyclopedia of human behaviour. Vol. 4, pp. 71-81. Academic Press, New York. Bury, M 2005, Health and illness, Polity, Cambridge, United Kingdom. Compston, A & Coles, A 2002, “Multiple sclerosis”. Lancet. Vol. 359. No. 9313. Pp. 1221–31. Davis, CM 2004, Complementary therapies in rehabilitation. SLACK Incorporated, New York. Davis, CM 2005, Patient practitioner interaction: an experiential manual for developing the art of health care. SLACK Incorporated, New York. Fitzhugh, K 2005, Body image. Hodder Wayland, United Kingdom. Multiple Sclerosis Society of Canada 2008, Multiple Sclerosis: Its effects on you and those you love. Greenwood Tamad Inc, Canada. Nietzsche, F 1954, The Antichrist. Penguin Books, New York. Orto, AED & Power, PW 2007, Psychological and social impact of illness and disability. Springer Publishing Company, Australia. Power, PW & Orto, AED 2004, “Loss, Grief, and Grieving: Family Issues.” Families Living with Chronic Illness and Disability: Interventions, Challenges, and Opportunities. Springer Publishing Company, Australia. Romanoff, BD 1993, When a child dies: Special considerations for providing mental health counseling for bereaved parents. Journal of Mental Health Counselling, Vol. 15. No. 4. Pp. 384-393. Stanford Encyclopaedia of Philosophy 2002, Paternalism. Web. 30 December 2009. . Thiele, LP 1990, Friedrich Nietzsche and the politics of the soul: a study of heroic individualism, Princeton University Press, Princeton. Weiner, IB, Freedheim, DK, Nezu, AM, Nezu, CM & Geller, PA 2003, Handbook of Psychology: Health psychology John Wiley and Sons, Australia. Read More