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
Chronic Illness’ Effect 2
Approximately 15% of children and adolescents have a chronic illness (Pinquart & Shen
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 does can 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, they have 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 as emotional, behavioral, and social problems.
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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 Pinquart & Shen (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
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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 (Pinquart & Shen, 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 (Pinquart & Shen, 2011). Internalization is a
fairly common occurrence across many different illnesses (Pinquart & Shen, 2011). Results of
internalizing problems could be demonstrated through anxiety, social withdraw, and depression
(Pinquart & Shen, 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
(Pinquart & Shen, 2011). Externalizing of emotions may be also, in part, due to the toll the
illness takes on the self-esteem of the individual (Pinquart & Shen, 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 Pinquart & Shen (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
(Pinquart & Shen 2011). Lastly, developing countries had higher internalizing and externalizing
of feelings as compared to developed countries (Pinquart & Shen 2011). These conclusions
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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 (Pinquart & Shen 2011). According to Seiffge-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 (Pinquart & Shen, 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
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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 (alKhurinej, 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 those which 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
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and social problems (Prchal & Landolt, 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.
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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 (Prchal & Landolt, 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
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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
(Pinquart & Shen, 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).
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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 (Prchal & Landolt, 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” (Prchal & Landolt, 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
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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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