Educational Implications for an Individual Suffering from Congenital Insensitivity to Pain - Essay Example

?Research Proposal: Educational Implications for an Individual Suffering from Congenital Insensitivity to Pain 0 Introduction Hereditary Sensory and Autonomic Neuropathies (HSAN) is composed of different inherent disorders that are closely related to the dysfunction of the senses. These senses include altered or no reaction to pain, a different perception on temperature, depressed reflexes, and other autonomic dysfunctions. One of the disorders in HSAN is the congenital insensitivity to pain (CIP). Most patients with CIP suffer from physical injuries, and other researchers have also assumed that children with CIP undergo learning disabilities, which was refuted by several studies (Axelrod & Simson, 2007). In addition, according to Rare Diseases UK (n.d.a), most parents with children who are suffering from rare diseases like the CIP have felt neglected from the system, such as the educational system, considering that their children went to secondary schools. With this implication, it is essential to improve the wellbeing of individuals suffering from CIP, and to insure that they would receive the maximum aid and assistance, which they are entitled to. With this on hand, this research proposal will be referring to medical, social, and holistic models of disability to understand and explore the implications of CIP to the educational involvement of patients. 2.0 Purpose The purpose of this paper is to examine the educational implications of an individual who is suffering from a congenital insensitivity to pain (CIP). In view of this, the paper will also examine how schools ensure students with CIP in the secondary level access full entitlement and on what manner can they progress in the national level. Aside from this, the proposal will try explore the medical, social, and the holistic model of disability in terms of understanding the implications of CIP in a student with the said disorder. 3.0 Importance of the Study It is important to examine the educational implications of secondary students who are suffering from CIP because it is a rare disease that could affect about five percent of the 10,000 people in the United Kingdom. Furthermore, most of these rare diseases are life-threatening with almost 75% of the affected individuals are children. Also, it had been alarming that as much as 30% of these children would die before they turned five (Rare Diseases UK, n.d.a). With this on hand, it can be inferred that the educational approach on students with CIP must be adopted and incorporated in school curriculums in order for them to attain the education they need. 4.0 Literature Review Congenital insensitivity to pain (CIP) is a disorder, which is a part of the Hereditary Sensory and Autonomic Neuropathies (HSAN). Also, CIP is considered as a rare disorder that is primarily distinguished with the absence of feeling or reacting towards pain stimuli. Most people with this disorder can be diagnosed during early childhood due to their inability to cry and react towards pain. There have been two common types of congenital insensitivity that have been diagnosed from the patients suffering from this disorder. These two types are congenital insensitivity to pain (HSAN - V) and congenital insensitivity to pain with anhidrosis (HSAN - IV). The focus of this study is the congenital insensitivity to pain (HSAN - V) and the cause of this disorder has not yet been clearly identified (Praveen, et al., 2010). In addition, due to studies conducted with regard to CIP, clinical assessments with the individual having this kind of disorder were done in terms of focusing on the lesions on the nervous system. With regard to this assessment, it was greatly accepted that the impaired perception of pain due to mental retardation, trauma, or infection is not under the scope of CIP. In addition, peripheral neuropathy became an added criterion in diagnosing and in differentiating CIP from a congenital indifference to pain due to the enhancement of microscopic and morphometric assessment of CIP (Nagasako, et al., 2003). Moreover, individuals who are affected with CIP are insensitive to pain, but this disease also resulted them to unintentionally injure themselves, autoamputation, and the fractures that they acquired healed slowly. Furthermore, the repetition of their fractures and injuries can also lead to osteomyelitis and Charcot joints. Aside from these, other patients with CIP also incur emotional liabilities, learning difficulties, and hyperactivity during their younger years. In addition, during these years most children with CIP are treated by preventing them to inflict injuries to themselves and by preventing hyperthermia. In many cases, the teeth of children with CIPA are extracted to prevent them from damaging their tongue, lips, and the other parts of the mouth (Wolraich, et al., 2007). On the other hand, many studies have shown that individuals can feel their own emotions because they can observe the emotions from others. As they mirror their emotions from others, the absence of a specific emotion then paralyses the ability of a person to empathise with others. For this reason, Danziger et al. (2009) conducted a study with patients having CIP in understanding their perception of the pain that is felt by others. In their study, patients suffering from CIP have the ability to diminish the pain felt by other people when there is no emotional output. Furthermore, the pain judgment of individuals with CIP has a strong relationship with their ability to empathise. In addition, the CIP patients, along with the controlled subjects, did not have any difference in terms of their anxiety and depression. Nonetheless, when the images depicting pain were shown to the subjects, the patients with CIP have lower pain intensity in comparison to the controlled subjects. Furthermore, many patients with CIP have been able to share their personal experience in a holistic and open manner. For instance, in the light of a 32-year-old woman and her two sisters who have CIP, she had stated that she rarely tells people of her condition. According to her, people would conclude that she is inevitable and that she could not be harmed; however, in her experience, there are more harms in feeling no pain. She had suffered many fractures and other physical damages. During her school years, she was told to keep her condition unknown in order to avoid other students from hurting her. Furthermore, in the case of Ashlyn Blocker, the 13-year-old girl has explained to her classmate that she can feel pressure when she is being punched, but she did not feel the pain. In view of this, her parents are afraid that if Ashlyn will not be able to act according to her disorder, she will eventually hurt herself or even die without her knowing it. Her parents also fear that people might hurt Ashlyn intentionally because she is painless. This fact brings her parents anxiety even if she is just left alone at the kitchen (Heckert, 2012). Moreover, due to the different physical and social problems that people, specifically students with congenital insensitivity to pain will experience a holistic approach is suggested. According to the Rare Diseases UK (n.d.b), there must be a proper designation and support from the different health care professionals when dealing with rare diseases. These professionals must properly address patients with this kind of diseases and must communicate with other healthcare providers. Furthermore, schools and other institutions must continuously provide medical, social, and emotional care to patients with disability even during in their adult life. It is essential for these institutions to acknowledge the presence of children or student with a disability within their community in order to cater and aid them to live a normal life (Rare Diseases UK, n.d.b.). On the other hand, according to the United Nations Educational Scientific and Cultural Organisation (UNESCO), inclusive education must be enacted and must be mandated. The UNESCO further explained that inclusive education is “based on the right of all learners to a quality education that meets basic learning needs and enriches lives. Focusing particularly on vulnerable and marginalised groups, it seeks to develop the full potential of every individual” (cited in Tatto, 2012, p. 94). In line with the education of individuals having a disability in the United Kingdom, children with a disability who had achieved general certificate for secondary education had increased in students with Special Educational Needs (SEN). However, the law on education without discrimination in the United Kingdom is still in the process of consultation. This event is attributed to the change of government during the passage and the coming of the Act. Nonetheless, there are still school prohibitions that are currently practiced and enacted by the law in the United Kingdom. These prohibitions include direct discrimination, indirect discrimination, discrimination arising from disability, and failure to make reasonable adjustments for disabled people (Center for Studies on Inclusive Education, 2011). 5.0 Methodology Prior to the gathering of data needed for the study, it is essential to determine the focus of the study. The subject or the issue of this research proposal is a male secondary student who is suffering from a congenital insensitivity to pain. Despite of this disability, he is an intelligent student who actively participates in class. On the other hand, he has problems in emphatising with other students. Furthermore, he is also unaware and does not have full knowledge on the physical damage and injuries he can cause to himself. In order to critically evaluate the subject or patient’s situation, the neurological and physical examination must be examined, which would result to the diagnosis of CIP. Aside from the student’s side, data from his parents, along with his teachers, will also be collected in order to fully evaluate the current educational and social status of the child. The primary data will be collected from the respondents through an electronic mail. Three different questionnaires will be mailed to the three different respondents of the study. The questions will include the demographics of the respondents and other valuable information that can be considered as essential for the furtherance of the research. Aside from this, the questionnaires will involve questions that are in relation to the students’ current health condition, educational status, and social interaction. Significance of Research Theory After the data have been gathered, it will be analysed with the use of the different theories. These theories include the medical model of disability, the social model of disability, and the holistic model of disability. The medical model of disability refers to the imperfections, flaws, and limitations of an individual. This model sought to cure disability, and if it is impossible, the individual will be treated in order for him or her to act normally. It is basically focused on the condition of an individual rather than the person itself. Labelling individuals is also most likely to be present in this model. Another model that is essential on the analysis of the data will be the social model of disability. This model was established by individuals with disabilities in order to uplift their worth in the society. It does not only consider the medial status of an individual with disability, but it also focuses on the rights, privileges, and feeling of a person with a disability. Aside from this, this also includes changing the perception of the society towards people with disability (Beith, et al., 2005). Lastly, the holistic approach model must also be used in terms of analysing the results because it does not only use the social approach, but it also seeks to understand the culture, ethnicity, and history of an individual. The scope of a holistic model of disability goes as far as the personal life of an individual (Lishman, 1991). After analysing the data gathered, it will then be analysed in relation to the models and the discussed literatures; the research findings and results will be first given to the participants. Next, the results will be distributed to organisations and individuals who are considered as significant for the study. These organisations and individuals include the school where the respondent is studying and the community where the respondent belongs. Furthermore, the research findings will also be sent to government agencies and private sectors involved in catering for the medical and social needs of people with disabilities or rare diseases. Aside from this, results will also be distributed to medical practitioners who are involved in the physiological and psychological treatment of people with disability. The findings of this research aim to change the perspective of recipients in dealing with individuals suffering from a disability like the CIP. Moreover, the dissemination of findings is intended to inculcate to the recipients, such as schools, the holistic model in terms of handling and caring for people with a disability or rare diseases. References Axelrod, F. & Simson, G.G., 2007. Hereditary sensory and autonomic neuropathies: types II, III, and IV. Orphanet Journal of Rare Diseases, [Online]. 2 (39), Available at: http://www.ojrd.com/content/2/1/39 [Accessed 10 January 2013]. Beith, K. Robinson, M. Tassoni, P. & Bulman, K., 2005. Children’s care, learning & development. Oxford: Heinemann Educational Publishers. Center for Studies on Exclusive Education, 2011. Legislation and guidance for inclusive education [Online] (Updated 11 January 2011) Available at: http://www.csie.org.uk/inclusion/legislation.shtml [Accessed 15 January 2013]. Danziger, N. Faillenot, I. & Peyron, R., 2009. Can we share a pain we never felt? Neural correlates of empathy in patients with congenital insensitivity to pain. Neuron, 61, pp. 203-212. Heckert, J., 2012. The hazards of growing up painlessly. New York Times, [internet] 15 Nov. Available at: http://www.nytimes.com/2012/11/18/magazine/ashlyn-blocker-feels-no-pain.html?pagewanted=all&_r=0 [Accessed 13 January 2013]. Lishman, J., 1991. Handbook for practice learning in social work and social care. 2nd ed. Philadelphia: Jessica Kingsley Publishers. Nagasako, M.N. Oaklander, A.L. & Dworkin, R.H., 2003. Congenital insensitivity to pain: An update. International Association for the Study of Pain, 101, pp.213-219. Praveen, K. Sudhakar, S. & Prenhat, M.P.V., 2010. Congenital insensitivity to pain. Online Journal of Health and Allied Sciences, [Online]. 9 (4), Available at: http://cogprints.org/7276/1/2010-4-29.pdf [Accessed 13 January 2013]. Rare Diseases UK, n.d.a. About rare diseases. [Online] Available at: http://www.raredisease.org.uk/about-rare-diseases.htm [Accessed 13 January 2013]. Read More