Chronic Illness’ Effect 1
Chronic Illness’ Effect on Children and Adolescents:
A Review of the Literature
Emily Muller
English 202 A, Section 1
Professor Henne
April 23, 2013
Approximately 15% of children and adolescents have a chronic illness (PinquartShen 2011). While most children and adolescents with a chronic illness have substantial physical side effects, these perhaps being the most noticeable, they also have considerable psychological side effects as well. Some of the psychological side effects children and adolescents with a chronic illness experience include emotional, behavioral, and social problems, as well as long-term mental health issues. Furthermore, youth who do not personally have a chronic illness but care deeply for someone who doescan have psychological side effects as well. Many of these psychological side effects are similar to those which are displayed in children with a chronic illness themselves. Even though children and adolescent’s lives can be filled with frightening experiences when dealing with a chronic illness, theyhave a wide variety of options to ease the difficulty of a life with uncertainty. Coping tools include, exercise, therapy, and education. Additionally, certain personality traits can also be optimized in order to improve managing a chronic illness. Pediatric chronic illness influences more than just physical health. It is important to analyze all relevant aspects of chronic illness in children and adolescents in order to provide them with the best opportunity to deal with their illness fully.
Children and Adolescents with a Chronic Illness
Children and adolescents who battle a chronic illness do so on a daily basis. All aspects of their lives are impacted by the physiological demands of the illness. The consumption of their lives by the disease inherently affects other parts of their lives. This interaction can cause other linked diseases to be diagnosed such asemotional, behavioral, and social problems.
Emotional Problems
A wide variety of emotional problems have been found to be linked to children and adolescents with a chronic illness. One of the major linked diseases is depression. According to al-Khurinej (2007), youth with a chronic illness are at higher risk than their healthy counterparts for anxiety, low self-esteem, and depression. For example, children who have asthma have an increased predisposition to depression (Peters & Fritz, 2011). In children undergoing chemotherapy for the treatment of cancer, fatigue has been linked to depression, as well as anger and sadness (Whitsett, Gudmundsdottir, Davies, McCarthy, & Friedman 2008). Often linked to these feelings, suicidal thoughts are more prevalent in diabetic adolescents than healthy counterparts (al-Khurinej, 2007). Some other potential emotional problems include anxiety, fear, and nervousness (al-Khurinej, 2007; Peters & Fritz, 2011;Hysing, Elgen, Gillber, & Lundervold, 2009). Lastly, according to Peters and Fritz (2011), children and adolescents with chronic asthma can develop Post-Traumatic Stress Disorder (PTSD). The increased risk of emotional problems children and adolescents could develop due to their disease go hand-in-hand with the behavior problems which are often noticed.
Behavioral Problems
Children and adolescents with a chronic illness are also at risk for behavior difficulties (Peters & Fritz 2011;Hysing et al., 2009). Some of the common behavior problems are, according to al-Khurinej (2007), “hot temper, lying, and cheating.” Also, ADHD is a commonly found behavioral issue in children and adolescents with a chronic disease (Peters & Fritz 2011). According to PinquartShen (2011), children and adolescents underreport the severity of their symptoms. One potential reason for underreporting symptoms is to make themselves seem healthier than they are. Appearing healthier allows the child to assume more normal activities that healthy children are able to do. As a result of trying to hide their symptoms, children and adolescents internalize or externalize their problems.
Children and adolescents with a chronic illness have a higher rate of internalizing and externalizing emotions, with internalizing being the most prevalent (PinquartShen, 2011). Internalizing problems increases as the stresses of the illness increase. Also, internalizing problems potentially could be due to the lack of control over the illness, the restriction of normal activities, or the physical side effects of treatments (PinquartShen, 2011). Internalization is a fairly common occurrence across many different illnesses (PinquartShen, 2011). Results of internalizing problems could be demonstrated through anxiety, social withdraw, and depression (PinquartShen, 2011).
Aside from internalizing problems, externalizing of problems occurs in children with a chronic illness as well. Externalizing problems is most commonly linked to illnesses of the brain(PinquartShen, 2011). Externalizing of emotions may be also, in part, due to the toll the illness takes on the self-esteem of the individual (PinquartShen, 2011). Externalizing emotions is very different than internalizing; therefore, certain risk factors are known to indicate the possibility either internalizing or externalizing may occur.
According to a study by PinquartShen (2011), female adolescents have a higher rate of internalizing problems compared to males and male adolescents have a higher rate of externalizing problems compared to females. Also, in the same study, it was found young children did less internalizing and externalizing of their problems compared to older counterparts (PinquartShen 2011). Lastly, developing countries had higher internalizing and externalizing of feelings as compared to developed countries (PinquartShen 2011). These conclusions suggest that internalizing and externalizing problems is controlled by a variety of different factors. Behavioral issues inherently lead to social problems for the children and adolescents with a chronic illness.
Social Problems
Children and adolescents who have a chronic illness are at an increased risk for social problems (PinquartShen 2011). According toSeiffge-Krenke (2000), having a chronic illness could affect a child’s or adolescent’s ability to gain and maintain close friendships. One potential reason is because of the vast differences between a healthly child and a chronically ill child. At a most basic level, chronic illness makes a child or adolescent different from his or her peers. This difference could lead to bullying. For example, Peters and Fritz (2011) found that youth with asthma were more often bullied than healthy equivalents. Additionally, bullying can be linked in chronically ill children and adolescents to the skewed levels of dependence and independence demonstrated by the individual (PinquartShen, 2011). Depending on the situation, the child may act in a way overly dependent or independent for their age or health.
The bullying directed towards chronically ill youth could be attributed to the inability to conform to the normalcies of a healthy child’s life (Seiffge-Krenke, 2000). The lack of conformity leads to a fear of being rejected (Seiffge-Krenke, 2000). Some disagreement exists as to the implications of this. In an article by Yousef (1993), as cited in al-Khurinej (2007), rejection, whether actually occurring or not, leads the individual to withdraw from social environments. Contradictory, according to al-Khurinej’s own research (2007), children and adolescents with a chronic illness (in this specific case, diabetes) did not feel lonely, leading to the further question to what extent withdraw happens. Also, to the question of whether withdraw directly leads to loneliness. Perhaps, chronically ill children or adolescents simply withdraw from that which is not of substantial value to them.
Behavioral, emotional, and social problems all have a great impact on social activities. The impact has been discovered to lead to an increase in psychiatric disorders (Hysing et al., 2009). Some of these effects can last long into adulthood, even if the disease itself does not.
Lasting Effects
Many long lasting effects of pediatric chronic illness have been found. First, in the study by Hysing et al. (2009), it was found that peer relationship problems indicate a higher risk of adult psychopathology. Also, along the same lines, 47.6% of chronically ill youth developed a psychiatric disorder within 10 years of their diagnosis, the most common being depression (al-Khurinej, 2007). It is definite that chronic illnesses leave their marks long into the lives of the individuals who battle them. Understanding the manifestation of these long term effects, can help us to better diagnose and treat mental illnesses to prompt the best results possible.
Children Affected by Chronic Illness of Others
The psychological effects of a chronic illness in youth are not only limited to those which personally battle them. The family systems theory illustrates the intricate details of a family. When one member goes through something challenging or unexpected, everyone else is also affected. Children and adolescents can be seriously impacted by those around them with a chronic illness, such as a family member or friend. Many of thosewhich are impacted are the siblings of children with a chronic illness.
A child’s chronic illness has been shown to have a negative effect on his or her siblings (Sharpe & Rossiter, 2002). Some of these negative effects can surface as behavior, emotional and social problems (PrchalLandolt, 2009). Although siblings are affected, according to Sharpe & Rossiter (2002), they are not as affected as their sibling with a chronic illness. Also, the illness’ effect on the sibling is due in part to the specific disease. The disease with the least amount of obstruction in normal functioning, or least amount of assistance required, had the least amount of an effect on the sibling (Sharpe & Rossiter, 2002). Some risk factors are known to increase the behavior problems in siblings including, limited parent education, the sick child’s mother being unmarried,larger family size, second-born birth order, being female (Thompson, Curtner, & O’Rear, 1984). Surprisingly, the effect of the sick child’s limitations decreases the healthy siblings’ antisocial behaviors (Thompson et al., 1994).
Whether siblings internalize or externalize their feelings is somewhat contradictory. According to Sharpe and Rossiter (2002), siblings of youth with a chronic illness often internalize their emotions rather than externalize. One potential reason for this is that the sibling assumes a caretaker role. The caretaker role, in combination with the often physical limitations of the chronically ill child, inhibits the sibling from expressing their emotions in a physical way (Sharpe & Rossiter, 2002). Alternatively, according to Thompson et al. (1994), siblings externalize their feelings more frequently in the form of stubbornness.
Lastly, some may think that a sibling relationship would suffer when facing a chronic illness. This has not been found to be true. In fact, sibling relationships have been found to be resilient to the chronic illness (Sharpe & Rossiter, 2002). Sharpe and Rossiter (2002) went further stating a sibling relationship could be enhanced due to the disease. The adaptation children and adolescents make can be maximized for all those involved through a variety of different coping techniques.
Methods of Coping
Chronic illness has many consequences on a child or adolescent’s wellbeing. Some of these detrimental side effects can be counteracted with a variety of coping techniques. Sometimes the hardest part is diagnosing the problem. Approximately 35% of depressive disorders are actually diagnosed in children (Peters & Fritz, 2011). This means that 65% of depressive disorders go undiagnosed. If a larger percentage of these issues were addressed, better management techniques could be used. Once a problem is diagnosed, health care professionals, family members and the individuals themselves can create a plan to encourage the best possible outcome. Some of the most notable treatments include education, intervention, and exercise. Also, certain personality traits have been linked to advantageous psychological health.
Education
The value of educating children and adolescents about the chronic illness that affects their lives is very important. According to Peters and Fritz (2011), education to asthmatic children and their parents improved lung function, which in turn improved school attendance and reduced the number of emergency room trips. Also, educating siblings is also proven to increase feelings of control. This sense of control leads to more security and less anxiousness in the siblings (PrchalLandolt, 2009). Education is a tool that is available which demonstrates important benefits for children and parents. Continuing education can be a community effort with the goal of promoting healthy, happy, and well-informed children and parents.
Intervention
There are many forms of intervention available to all members of a family dealing with a pediatric chronic illness. The wide variety of options available allows every member to choose what is best and most beneficial for them. Not every person is the same; therefore, not every coping plan is the same. The knowledge of options can help to decide which are most advantageous for each individual.
Child or adolescent with chronic illness
There are many interventions for a child or adolescent with a chronic illness that have proven to be beneficial. Behavior therapy can be used to improve a chronically ill child’s medical symptoms (Eccleston, Palermo, Fisher & Law, 2012). According to Pinquart and Shen (2011), psychosocial interventions can help resolve some behavior problems these youth may face. Also, including a child’s parent in psychological therapies helps relieve pain after treatment (Eccleston et al., 2012). A relatively new psychological treatment for physical symptoms is biofeedback. Biofeedback’s full extent is still being explored. However, EMG biofeedback has been proven to reduce the effects of emotionally triggered asthma (Peters & Fritz, 2011). Also, stress management has been proven to improve behavior problems in asthmatic patients (PinquartShen, 2011). Some of these treatments are specific to the child or adolescent dealing with a chronic illness because they relate to the physical aspects of the disease. For this reason, there are some different coping options for children who do not have a chronic illness but their sibling does.
Sibling of child or adolescent with chronic illness
Siblings of children or adolescents with a chronic illness also have interventions available to ease their situation. Some of the options available are camps, group therapy sessions, or individual therapy sessions. In a study by Prachal and Landolt (2009), they found siblings of a child with a chronic illness interventions improved depression symptoms leading to improved emotional well-being, knowledge of the disease, and their health related quality of life (HRQoL). A popular belief to why these interventions work is that siblings are receiving knowledge. This knowledge can help with feelings of control and acceptance with others going through a similar circumstance (PrchalLandolt, 2009). Interestingly, the same study found inconsistencies in the benefits of intervention for “anxiety, behavioral problems, social adjustment, self-esteem, and perception of the illness” (PrchalLandolt, 2009).
Exercise
Exercise is another proven method of coping with a chronic illness. The benefits exercise can give an individual on the effects of a chronic illness in adults has begun to be studied more, however its effects specifically on children have yet to be fully explored. As previously stated, depression and anxiety are prevalent mental disorders diagnosed in chronically ill children. Exercise can help to reduce the effects of depression and anxiety (Field, 2012). Also, exercise can counteract inflammation in autoimmune disease and symptoms of irritable bowel syndrome (Field, 2012). Specifically in children with asthma, exercise has been linked to a decrease of disease symptoms (Field, 2012). Further research on the benefits of exercise in adults and children will help to identify the best methods to enhance the chronically ill person’s life.
Personality Traits
Lastly, some certain personality traits have been linked to more positive outlook on life in chronically ill children or adolescents. According to Belgrave and Washington (1986), assertiveness and personal control can help the child feel comfortable with his or her illness. The repressive adaptive style is characterized by individuals who self-report experiencing “low distress and high restraint” (Erickson, Gerstle, & Montague, 2007). This personality style has been linked to lower levels of depression, and anxiety in pediatric cancer survivors than other styles (Erickson et al., 2007). Notably, a higher percentage of repressors were present in a sample of pediatric cancer survivors than the general public (Erickson et al., 2007). It is not being suggested that a personality should be altered, rather that certain aspects of a personality could benefit a child or adolescent experiencing a serious illness. Conscious understanding of proven mental outlooks can help youth to cope with an illness that affects all parts of their lives.
Conclusion
Chronic illness has an immense impact on children and adolescents. Whether a child personally has a chronic illness or their sibling does, it affects them in a variety of ways. Children with a chronic illness themselves can have a variety of emotional, behavior and social problems which can last long into adulthood. Also, siblings of children with a chronic illness can experience a variety of similar problems in their emotional, behavioral, and social lives. Although these complications can be prevalent and serious, there are a variety of positives which could emerge from a child battling a chronic illness. The child will most likely demonstrate strong personality traits and enhanced relationships with not only their siblings but others in their lives. To maximize positive outcomes, many different coping techniques are available. By identifying the needs of the individual, the best option for coping can be determined. While a pediatric chronic illness impacts a large majority of life, it does not have to be debilitating. As Eleanor Roosevelt said, “Life is what you make it!”Hopefully, future research will continue to enhance the options available to those battling a chronic illness so everyone has the opportunity to lead a long, health life.
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