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Jacob Dohrman ENGL101_0501 Ms. Dorland Perry December 4, 2012

The Effects of Life-long Illness and Mental Disability on Children

Disease and disability has been prevalent in our everyday lives and has plagued a countless number of people since the beginning of time. Living with a serious disease or disability can pose numerous challenges and obstacles to a person trying to live a normal everyday life. Children, in particular, can be negatively affected by developing a life-long illness at a young age. During my freshman year of high school, I went in and out of the hospital with gastrointestinal problems and other complications from medicines. After about two months of constant pain and the loss of about fifty pounds, I was diagnosed with Crohns disease, an autoimmune disease in which your immune system attacks your digestive system. After this diagnoses it became clear that I would need to make a few changes to my lifestyle. Fast foods and foods with a lot of grease were completely out of the question. I would be constantly medicated and had to accept the fact that for the rest of my life I would be attending regular doctors appointments and other tests relating to my disease. During flair ups of my disease like I

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was currently experiencing, I would be in constant pain and be plagued by other embarrassing and onerous symptoms. At the age of thirteen, all of these things were overwhelming to say the least. After growing accustomed to the new procedures and routines that I would have to follow, I was able to live a relatively normal high school life. Children whom are stricken with a disease or disability face many challenges every day. Constant visits to the doctor can be extremely time consuming, as well as demoralizing. Daily medications can be a hassle and the worries that accompany missing a dosage of your medicine are equally as cumbersome. Embarrassment over the symptoms or effects that are noticed by others is always possible, and for some constantly causes them anxiety. Pain is a great cause of distress and discomfort among children. Children whom are affected with an illness or disability can be affected emotionally, physically, and socially. These effects include but are not limited to: a greater risk of developing mental disorders, a risk of being underweight or shorter than average, and a risk of developing social anxiety or being socially isolated. Research into the effects of illness and disability on children and their families is a very specific topic; therefore studies on these effects are a little scarcer than other topics might have been. Basing the paper on the effects produced on children by one specific disease would be ideal; however, the information available does not allow it. While all diseases and disabilities are different in that they have different effects and symptoms, they all share the common characteristic that they affect the stricken person negatively. This allows one to make generalizations about the effects of disease on everyday life of all diseased and disabled children based on studies conducted on specific groups of ill children. A lot of the studies which have been done are very in depth correlation studies, with many different behavioral and psychological scores being used and compared to each other. These scores will be used and

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deciphered to the furthest extent possible when analyzing these studies. In this paper I will attempt to explain the effects an illness or disability can have on a child. The effects will be considered in the emotional, physical, and social aspects. In addition, consideration into the effects that childhood disease or disability can have on a childs family members will be taken. I will base a lot of my research off of studies on Crohns disease since I am most knowledgeable about that disease specifically, however studies on other diseases will be used when appropriate or when no studies on Crohns can be found. The emotional effects that can accompany a disease in childhood can disrupt a childs everyday life. One aspect that is a huge factor in this is pain. Chronic pain is a symptom that accompanies many diseases and has a lasting impact on children. Being in constant pain does not only restrict a child from performing certain everyday tasks and activities, it can also be distracting and interfere with their family life. In an abstract study performed by psychologists, in the Netherlands, and led by psychologist Joke A. Hunfeld, one hundred twenty-eight adolescents from the age of twelve to eighteen were studied over a three week period. These adolescents were all affected by chronic pain, and every day they were asked to fill out a questionnaire. The mothers of the adolescents also filled out a questionnaire regarding the impact of the childs pain on the family. The study concluded that The higher the intensity and frequency of the pain, the lower the self-reported quality of life of the female or male adolescent, especially regarding psychological functioning, physical status, and functional status (Hunfeld et al. 145). More behavioral problems were also associated with higher pain. This positive correlation between reported intensity of pain and the quality of life reflects that pain can affect a child a great deal. In addition to the reports from the children, the mothers of the children reported restrictions, particularly in social life, and problems dealing with the stress of the

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adolescent's pain and Mothers of families with an adolescent who showed a relatively large amount of pain reported more restrictions than mothers of adolescents with less severe chronic pain (Hunfeld et al. 151). Mothers are naturally more attached to their children and thus are more directly affected by things that happen to their children. If a mother sees her child in pain she will obviously be affected. The positive correlation between pain and reported restrictions in social life and stress shows that chronic pain can affect more than just the child whom is in pain. Mothers are more at risk of being affected by their child being in pain than other family members. Another similar study was conducted at the University of Californias School of Medicine, and led by psychologist J.W. Varni. One hundred and sixty children and adolescents with chronic pain and their parents completed questionnaires measuring pain intensity and a variety of other emotional factors. Consistent with the previous study, this study showed an association between higher pain and more depressive and anxiety symptoms, lower self-esteem, and more behavioral problems (Varni et al 154). In one more similar study, conducted throughout Europe and led by psychologist Heather O. Dickinson, one-thousand one-hundred seventy-four children afflicted with cerebral palsy were studied. These children were interviewed and analyzed regarding their quality of life in relation to pain and impairments. The study found that pain was common and associated with lower quality of life (Dickinson et al. 2171). All three of these studies were performed on different random groups of children in different regions of the world. All of these children were affected by different forms of chronic pain. However, the studies all concluded that chronic pain could lead to psychological problems, behavioral problems, and a lower quality of life. In addition, the study which included a study on the effects on family members showed that mothers in particular could see a more restricted social life and

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be more stressed than others. These findings show that even one single factor like pain can go a long way in affecting an ill childs life emotionally. Physical effects on adolescents and children with chronic diseases are also very noticeable and prevalent. In individuals with Crohns disease, one of the main physical affects is the retardation of growth and generally the suppression of growth and ability to gain weight. In one study conducted at the University of Pennsylvania by a team of doctors led by Dr. Jon M. Burnham, the height and body mass Z scores of adolescents with Crohns were compared to the Z scores of those without Crohns, and the results showed that the Z scores of those with Crohns were substantially lower (Burnham et al. 1963). For those not understanding z scores, this means that, on average, individuals with Crohns were generally shorter and had a lower body mass index than those who were healthy. These results leave one wondering what might be causing the stunt of growth in these affected adolescents. Could it be that affected adolescents are not eating as much as healthy individuals? Are the affected individuals not processing nutrients as well as healthy individuals? Another study performed by doctors in London and led by Dr. Giorgio Zoli may have an answer to why the affected individuals generally grow less. Ten adolescents with inactive Crohns disease were assessed on their average resting energy expenditure and average caloric intake, as well as other factors. The study showed that adolescents with Crohns expended more energy relative to caloric intake than those who were healthy, despite the fact that they had the same amount of physical activity (Zoli et al 1754). This increased resting energy expenditure was not able to be attributed to anything in the study. However, it can be assumed that the children whom are stricken with disease are expending more energy fighting off their disease. Although this can be generalized to show the heights of all children stricken with disease will be affected by increased energy expenditure, generalizations about disabilities

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physical effects on children cannot be made based off of the findings on the physical effects of illness on children. In one study performed by doctors at the Childrens Hospital of Philadelphia, led by Dr. Christine Cronk, seven-hundred thirty children ranging from birth to eighteen years old whom were afflicted with downs syndrome were analyzed. The data used for analysis was their centile charts. Centile charts are charts documenting the average measurements of height, weight, and head circumference in comparison with age and sex. The results found that stature and growth rate for stature were reduced at most ages from birth through adolescence (Cronk et al. 107). Although growth rate and height were relatively reduced, the study also found that children with Down syndrome have a tendency to be overweight beginning in late infancy and throughout the remainder of the growing years (Cronk et al. 102). Although children whom are afflicted with downs syndrome are generally shorter than average children their age, they also generally weigh more. This could be due to the fact that children whom are mentally challenged may not be as active as healthy children and thus burn fewer calories. This can be generalized and show that all children whom are afflicted with a disability are at a greater risk of becoming overweight. Regardless of the effect, it is clear that illness or disability can have a negative impact on physical development. Speaking from a personal aspect, I can say that having a disease can greatly affect a child socially. Being constantly asked and bothered by your peers can become bothersome and uncomfortable to a developing child. Not only that, but some children who are not understanding of what another child whom has a disease is going through might even make fun of them. One can only imagine how a child might feel in a situation like this, being scrutinized and sometimes even excluded from things because of a disease that they have, which is completely out of their control. In a study conducted by doctors at Emma Childrens Hospital in Amsterdam, children

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whom were affected with inflammatory bowel diseases (IBDs) were asked to fill out surveys that evaluated them psychosocially. The results showed that children with IBDs felt uncomfortable about their disease, and felt like they had to ask other children to be considerate of them or explain to them their disease-related restrictions (De Boer et al. 400). Circumstances like these can make a child feel alienated from other children their age. The article went on to say that children with IBDs tended to seek comfort from family rather than peers, were less likely to go out with friends and have fun, and had less confidence romantically. Having a normal social life is important to adolescents, and not having the comfort of having friends and living the normal life of a child can severely hinder their social functioning and development. In the United Kingdom, doctors from Leicester General Hospital mailed a questionnaire to families of children with Crohns disease investigating the quality of life of the children. The results of the surveys found that sixty-seven percent of the children were unable to participate in sports on a regular basis, sixty percent felt unable to leave the house, and fifty percent were unable to play with friends (Moody et al. 43). As a child, being social and doing activities with other children helps you to develop your social skills and teamwork abilities. Being unable to play sports or go out and play with friends is bad for a child and can lead to problems like social anxiety or social isolation. A study which was conducted at McMaster University in Ontario considered the social problems which developed in children with illness and disability found that children with an associated disability were at greater [a] than threefold risk for psychiatric disorders and [had] considerable risk for social adjustment problems in comparison with healthy children (Cadman et al. 805). Children with a disability normally lack social skills and other communication skills. Not having basic communication skills to develop relationships with others poses a problem to social life and social development because one cannot communicate and live the life of a normal

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person. Children affected with diseases or disabilities can be affected very differently in the social aspect. While some children may be relatively unaffected, some are greatly affected. Social effects are influenced by each individual childs life outlook and a variety of other casespecific factors. The implications that can arise from a childhood disease or disability can have significant impact on children during their childhood and on throughout the rest of their lives. Children whom are afflicted by an illness or disability can be affected emotionally by things like chronic pain. Chronic pain has been shown to cause children to have more social and behavioral problems and results in an overall lower quality of life in the children. These problems can lead to psychological disorders like anxiety and depression. Physical effects are also prominent. Children with both illness and disability show a general suppression of growth; however, children with disability are also at a greater risk of being overweight. Socially, ill and disabled children feel uncomfortable around their peers. Ill children feel the need to explain their restrictions to peers and feel isolated from other children. Ill and disabled children are at a greater risk of developing things like social anxiety and social isolation. Although ill and disabled children are the ones primarily effected by their illness, family members can also be affected. Mothers of ill children whom are in pain report more stress in their everyday lives and a restriction in their social life. The restrictions and stress reported increased as the pain of the children increased. These findings show that a much care should be taken when dealing with ill or disabled children and their families. Perhaps ill children should attend regular psychiatric evaluations and talk with psychologists about their social lives and everyday problems in order to combat the emotional and social problems which can accompany disease or disability. Psychologists could catch emotional and social problems in early development and seek to

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combat them through therapy and medication. Additionally, talking to a psychologist could help the child in coping with the pain or even embarrassment that accompanies their disease or disability. Doctors should keep in mind the risks that are associated with different diseases and disabilities in all aspects of their patients lives, and keep them informed on these risks. Dealing with diseased and disabled children in the right way is crucial to their development, and can go a long way in making a difference in their lives.