The Impact of Chronic Illness on Children and Recovery From These Illnesses - Research Paper Example

 The incidence of chronic illness among children is common and hampers normal childhood activities, and lack of treatment leads to improper academic pursuit (Bannon, 1995, Cellano and Geller, 1993). To understand better the long term effects of chronic illness we can use the definition that it is “'a condition which lasts for a considerable period of time … and/or persists for more than three months in a year or necessitates a period of continuous hospitalization for more than a month' (Thompson & Gustafson, 1996, p. 4). Chronic illness definitely has a very adverse impact on the lives of children and one of the greatest impacts is on the child’s education. When children are afflicted by a temporary disease or an accident like a broken arm or leg, the time and stages of recovery are definitive and recovery within a short period is certain. But this is not the case when children suffer from a chronic illness such as Post Traumatic Stress Disorders or other crippling diseases. In such cases, there is no set time, pattern or duration for recovery. Since every child is unique, each ones progress would be different. According to (Kinchin 1997) recovery should involve “Therapy, which includes counseling, and any other form of support in which the survivor has confidence.” The whole profile of chronic illness among children has changed considerably and recent data reveals that about 160 of the 1000 children screened showed asthmatic tendencies (Struniolo et al, 1994), while four showed signs of epilepsy (Verity, CM; Ross, EM 1985) and about one to two were diagnosed with insulin dependent diabetes (Metcalfe, MA; Baum, JD 1988). The alarming factor of these studies was that asthma and diabetes showed an upward rise. Apart from these illnesses, peanut allergy leading to anaphylaxis affected one in 200 children (Tariq, SM et al 1996), while there were children dependent on methylphenidate to tackle ADHD, HIV infected kids and those suffering from sickle cell disease. Impact of PTSD on Education The impact chronic illnesses have on the educational pursuit of children is undoubtedly very great and much effort is being put into the study and remedy of these diseases. The process of academic intake is first and foremost hampered by the fact that there is no clear legislation as to the role of the school teacher vis-a vis, the task of administering of medicines, because school health services are primarily non-resident and geared towards health promotion rather than the task of being responsible for administering medicines to individual children in accordance to their prescription Eisner and Town (1987), after conducting detailed research found that teachers expressed their inability to deal with medical emergencies that may arise for a pupil having a chronic illness, since they lack in the know-how needed, to deal with such situations. The medical training provided to teachers is the basic minimum and is centered only around administering first aid. Children with chronic illness miss school very often because of the necessity of going to hospital, staying back at home during severity of the condition and regular medical check ups. This often causes a decrease in interest as well as in academic performance since the child has been irregular in attending school and may sometimes also miss taking regular exams (Fowler Johnson & Atkinson, 1985). When trauma strikes children in the form of extremely poor health due to a chronic disease or disablement or because of stress and trauma gained by life threatening incidents or extreme grief or turmoil, it becomes very difficult nursing these survivors back to health. Children suffering from PTSD find it almost next to impossible to concentrate on their studies. They always seem to be preoccupied and in a land of their own. Most of the time they seemed lost because they relive the grief anguish or trauma over and over again and hence the time which should be spent on their education is lost. "The purpose of schooling is not just to put children into schools; it is to educate children to the best possible standard."(Special Educational Needs HMIs) The learning process at school is not a tool only for academic progress, but also shapes a child’s personality, teaching him social, moral and ethical values in the process. For a child suffering from chronic illness, being denied the opportunity to attend school or even restricting school hours, robs him of the sense of normalcy which school endows (Bessel).Bender, (1995) and Black & Hyrd (1995) also hold treatment for illness as responsible for behavioral changes in students, which in turn impacts, their studies. School then becomes a place where a child with chronic illness finds himself socially and academically challenged. Being excluded from certain activities like physical education and extra curricular activities reinforces the feeling of being different from peers and also emphasizes their dependence on others. Common Habits exhibited in School Children afflicted with a chronic illness would find learning quite difficult because their concentration would be emphasized on their trauma and disease rather than on learning. These children form their own generalizations in their mind which again has an adverse impact on their studies. For example a teacher in their eyes would be a bully and any small event would be looked at in the most extreme terms. Due to their weak and emotional state of mind, they mis- label themselves using words such as “wimp” or ‘weakling.” Children suffering from chronic illnesses have a bad habit of discounting themselves even when the outcomes are quite positive. For example they may say, “Yeah I achieved this – so what”? Another regular habit of such children is ‘Magnification and Minimization’ of their own self worth. The usual pattern of such behavior is that they magnify their shortcomings or mistakes and minimize their strengths or make light of them. Another very common habit of children who are affected by a chronic disease is jumping quickly to conclusions. For example, in case they feel a bit left out of a group for some reason or the other, they are quick to conclude that everyone else think they are weak and should get over their illness soon. Over – personalization of a situation in case they are remotely involved and something went wrong is quite common to this group of children. They try to take on the blame themselves and feel guilt pangs. It is even more traumatic for them in case the person dies, because they think they were the cause of it and tell everyone that if they had not made a mistake the person would not have died. In order to better understand the conflict that arises in a child’s education due to chronic illness, we shall study the impact of ME/CFS on students. The Guardian, one of the most respected UK newspapers, likened the high incidence of ME/CFS in school students to a plague, and a report published in the Journal of Chronic Fatigue Syndrome showed that between 1991-1995 more than half of sickness leave on a long term could be attributed to this disease. The Royal Colleges of Medicine estimates that one million Britishers are afflicted with ME/CFS, of which children account for 10% of the cases, excluding teenagers. This study was conducted over a period of five years where 333,327 children and 27,024 staff from six Local Education Authorities from diverse areas were covered. The study showed that of the children who took long term leave, 51% had ME/CFS while cancer and leukaemia accounted for 23% of long term absences. (Colby, Jane) In the study conducted by Jane Colby and consultant microbiologist Dr. Elizabeth Douseth, the most alarming find was that wherever the home tuitions and modified timetables were of a low level, parents tended to withdraw their child completely from school. This deprives the child of the benefits that may accrue to them from the state education system. In the study it was found that home tuition facility ranged between 14%-79% while that of modified timetables was 50%-86%, depending upon the views of the local authorities. ME/CFS, as a disease has to run its own course, with intermittent relapses and remits, but school authorities are looking for short cuts which could get the students back to school as soon as possible so that home tuitions may be stopped. Students suffering from ME/CFS cannot do a great deal of mental work because its effect on the brain is similar to the physical conditions of stress and fatigue it shows. Parents also protect their child from extra mental effort since pushing an already malfunctioning brain induces physical and mental fade which lasts for days and sometimes even weeks (Colby & Jacobs). The cognitive ability of a child is impaired (Bell) and another physical aspect which interferes in a school education is the fatigue brought about due to walking around the campus and moving from class to class. A child suffering from chronic illness has some typical learning problems relating to attention and concentration, poor memory, sequential difficulties and lower comprehension ability. A chronic illness like asthma, which is widespread among children interferes in the child’s education not because of any effect it has on brain functions, but because of frequent absence from class room, the stress of being chronically ill, reduced physical activities, reduced expectations from parents and low self esteem. (Bender, Bruce G) Another very important factor which hampers the education of a sick child is the fatigue caused due to illness. In such a case, the child should be given energy efficient education, where in non essential tasks and time consuming work is not foisted upon him. The child should be made to attempt those subjects where he feels greater proficiency since the cognitive aspect of the illness interferes with a broad based curriculum. A practical goal helps in achievement of the targets and boosts up the morale which is highly therapeutic. The time table for recovery from a chronic illness is not well defined and students should use their limited energy to fulfill their limited educational goals. While it would be futile to lay all the blame on the school and teacher, it is important for them to create an environment of easy accessibility. Also, because of reduced expectation from teachers, the onus to perform well is missing and it affects the child’s studies, according to the ‘Encouraging Voices’ project. Although children who are marginalized due to illness or disability are to join the mainstream as soon as possible, there was a feeling of neglect and oversight. This is seen in lack of modification of curriculum. Supporting Children with Post Traumatic Stress Disorders Children with PTSD need all the support that they can get. Researchers, Williams, (1993) and Horowitz (1979) say that recovery is neither smooth nor predictable, “Nor will it incorporate a wealth of stages, which extend far beyond the models…..” Recovery for a chronic illness can be compared to a game of snakes and ladders where “Tragically a few people may never finish the game.” (Kinchin 1997) One of the best strategies in helping children to recover from PTSD is to set some clear cut goals or targets for recovery. These targets should be realistic and well within the reach of the child in order for it to be encouraging. They should also include a specific time frame for achieving these targets and once achieved the child should be encouraged with a positive remark or treat as a reward. A rest or breathing space could be given between an achievement and embarking on the next goal. Necessary interventions should be applied in case a child does not succeed and gets defeated, thereby building unrelinquished trauma further. Explaining to a child the complicated road to recovery of PTSD using the analogy of a snake and ladder game would e more realistic and simple and would render greater insight into the disease. Hospitalization Any kind of impairment that is either physical or the loss of control over ones action leads to a child feeling diminished with a poor self-esteem and self-image. This leads to feeling of loss of identity and continuity. Some of the best studies were conducted in the United Kingdom on the effects of hospitalization of children and their subsequent fall out. Children who had not experienced hospitalization in their early childhood faced more problems than those who had hospital experience at an early age. These difficulties included reading difficulties and problematic behavior both inside and outside the class room. These studies also concluded that a single admission of less than a week did not interfere with studies but with repeated hospitalization the child showed long term behavior problems. Recovery from PTSD and other chronic illnesses Recovery from PTSD is very much akin to recovery from grief (Worden 1991) Children recovering from a chronic disease are able to understand themselves in a much better light. They learn to share their hurt feelings with others and begin to build up their self esteem. They learn to live in the present and leave the past behind and thereby look forward to the future. Once a chronic illness has been cured and the child is much healthier, their capacity for learning increases and they build up good self esteem and confidence. They become stronger in body and mind and are able to tolerate the petty problems they may come across in life. Life holds a whole new meaning for them and progress both in health and academics. Though they recover almost completely, yet the scars of trauma lie within their memory and is remembered from time to time but since they are stronger they are able to view it in a realistic manner. The Educational System and Children with Chronic Illness Schools have to take a proactive role in integrating the sick child into the schooling apparatus. It is the duty of schools to find health accommodations and aids for education and thereby develop a strategy which can meet the needs of students. Educational authorities and parents should ensure that the child receives at least 5 hours of teaching every week with a subtle increase as the illness subsides and the child’s coping mechanism becomes stronger. The effect of chronic sickness on a child keeps them away from school for long periods at a time and often they are dubbed as 'invisible', because their absence is authorized. The educational needs of a sick child have led to the publication of ‘Guidance on the Education of Children Absent from School Through Ill-health’ (SEED 2001). Section 2(1) of the 2000 Act states that, such children should be educated within the constraints of their medical condition and because of the inclusive policies of government, these children are being taught at school as far as possible. In fact the Standards in Scotland’s Schools Act 2000 is emphatic in stating that the authorities should show high levels of concern and take into account the student’s views on decisions which impact them. The level of support varies upon the disease and its severity so that a child with chronic asthma will miss school for shorter periods, but more frequently, while one who has met with an accident or a one-off illness may need a single long or short leave. A child suffering from chronic illness has the added burden of taking medication during school hours and it is also important to sensitize teachers and peers to the child’s condition. The parent, the school and the person responsible for monitoring the child’s health, need to chalk out a program, wherein the child can maximize his learning potential, with minimum determent to his medical condition. These carers must also have good communication channels so that an assessment of health and academics can be co-related, to the benefit of the child. Since the child misses attending school, alternative methods like sending school work to be completed at home and keeping in contact via email can be established. The child should be referred to a Visiting Teacher Service and a Support Group organized to help the child in all spheres of school life. If possible, the school should try to make physical adjustments, like installing ramps, toilets for the disabled, rails and adaptive equipment to facilitate easier movement around the campus. The school can also apply for extra funding since educating a child with chronic illness, needs special attention and more innovative methods of studying. Government and chronic illness The Government of United Kingdom in Section 19 of the Education Act, stated that the Local Education Authorities should make provision for the education of children who could not attend school due to illnesses. The document titled “Access to Education for Children and Young People with Medical Needs” Julie Noble Churchill Fellow (2005) was published by the Department for Education and Skills. It provided Local Education Authorities with guidance so as to provide children with illnesses with an equal education opportunity. Some children suffering with chronic illness are able to manage their health condition at regular schools. These children according to studies conducted gave importance to an understanding teacher. Support was valued and needed to have an active social life at school. A wide range of support is needed by teachers and parents of the student suffering from chronic illness. Health related support from NHS is valued. An important way in which the NHS professional can help a student is by liaising with the school authorities, parents and medical practitioner to draw attention to the specific needs of the student. It is also required for the professional to take a holistic approach to the needs of the chronically ill child as it is not necessarily the same as that of adults. Conclusion The impact of chronic illness on children varies from child to child and therefore recovery from these illnesses is difficult to assess. Though there are various psychoanalytical tests to gauge the depth of trauma inflicted by the disease, yet the recovery seems more a state of mind than what tests or scores can determine. However, what seemed impossible in ancient times, is very much possible in these modern times due to great advancements made in the fields of research, science and technology and computing. Due to current and more advanced research, modern interventions and enhanced models of recovery has made it more within our control. Children who have recovered from a chronic illness have to put in a lot of effort not only to catch up on his studies but also cope up with situations that are traumatic that making life a more realistic one. References Bender, Bruce G. Are asthmatic children educationally handicapped?. School Psychology Quarterly. 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