1

Running head: CHRONIC ILLNESS IN CHILDREN

The Effects of Chronic Illness in Children

Casey Musice, Kelsi Noeth and Alyssa Powers
Missouri State University
Hannah Sutton
Satakunta University

The Effects of Chronic Illness on Children

The World Health Organization (WHO) defined health in a manner that can be applied to
most people and it is as follows: Health is a state of complete physical, mental, and social wellbeing and not merely the absence of disease or infirmity. Health is more than just being
physically well externally. Health also includes the mind, body and spirit. Anything that
interferes with everyday life makes a contribution to health and well-being. It can easily be seen
that health definitions vary from person to person and, in turn, from population to population. In
the United Kingdom, it is taught that health is made up of many aspects including mental,
physical, emotional, sexual, and social health. Therefore, if one of these is in a negative state
then a person may not be referred to as healthy. In Finland, health revolves around
salutogenesis. Salutogenesis takes a look at how people can stay healthy during stressful

CHRONIC ILLNESSES IN CHILDREN

situations by figuring out ways to cope with the stress so it doesn't interfere with their daily lives.
Health means being in an all around state of wellness which includes being free from physical
illness or injury, mental and emotional instability, and social stress. Everyone has different views
of health, but all of the views relate to the same thing: the overall well-being of each individual.
The specific vulnerability group that is the focus of this paper is the effects of chronic
illness on children. A chronic health illness may be a physical, emotional, or mental ailment
preventing the child from going to school or from performing activities of daily living (Compas,
Jaser, Dunn, & Rodrigues, 2012). As many as 1 in 4 children in the United States suffer from a
chronic health condition (Van Cleave, Gortmaker, & Perrin, 2010). Chronic illness can be
defined as a health condition or disease that is persistent and has long lasting effects; a condition
that develops over time and lasts longer than three months. Many children with chronic illnesses
have a significant amount of stress in their daily lives. It is said that chronic illnesses exert
greater stress when compared to an acute illness. In the past, many diseases were terminal.
However, now children with chronic illnesses can survive for many years, though their quality of
life may not be as high as a child without a chronic illness. This increased life span is due to
early detection and diagnosis and various treatment options. Some examples of chronic illnesses
may include type 1 or type 2 diabetes, cancer, cystic fibrosis, sickle cell anemia, and asthma
(Compas et al., 2012). Serious chronic illnesses are often unanticipated and uncontrollable for
children and their family.
Causes of Chronic Illness
Childhood chronic illness can be caused by both genetics and the environment.
Determinants of health such as income, education, physical environment, social support,
genetics, health services, and gender may apply to some of the illnesses but not others. Since the
population children with chronic illnesses is very broad, it is hard to pinpoint one specific risk
factor. Whatever causes cancer isnt the same risk factor as what causes asthma. The

CHRONIC ILLNESSES IN CHILDREN

environment may trigger chronic illnesses such as in a client with asthma. As it is known, a child
with sickle cell anemia in a stressful environment may go through a sickle cell crisis. If a child is
brought up in an environment without exercise or healthy food options they may become
susceptible to getting type 2 diabetes. Some research has also shown certain cancers linked with
environmental causes. However, just as there are risky environments, there are also positive
environments. If the child is brought up in a nurturing household with access to clean drinking
water, exercise, and healthy food they may have a decreased risk of developing an illness such as
type 2 diabetes compared to someone without those advantages. Environment clearly can have
both positive and negative impacts on a child.
A child with a chronic illness may describe health in a variety of ways depending on their
specific illness, as well as their age and experiences of life with the illness. Going back to
WHOs definition of health that health is a state of complete physical, mental, and social wellbeing and not merely the absence of disease or infirmity, it is hard to say that a child with a
chronic illness would agree with this. As described earlier, a child with a chronic illness may not
be mentally healthy or physically healthy. The video Adjusting to the reality of your diagnosisKids4Kids Videos from Mott Childrens Hospital takes a look inside the lives of children with
chronic illnesses. Many of the children focus on love and the aspects of life that make them
happy. Health for a child with a chronic illness encompasses a much different meaning compared
to other peoples definitions of health. Health changes day-by-day for some of these children.
Tucker, who had a liver transplant, said it is important to keep a positive attitude and believe
that youre going to be okay. He also said to put your health before everything else. When
many of these young children have been very close to death their views of health change. They
view health in a different light, and see every day in a positive way. Health is being able to see
their family and their friends, and being able to do the things that they enjoy doing while also

CHRONIC ILLNESSES IN CHILDREN

knowing their limitations. Health is having the optimism necessary to live their lives to the
fullest.
Health Concerns and Prevention
There are many primary health concerns among this vulnerability group that are
important to be made aware of. Some of those stressors include being away from friends and
family if the child is in contact isolation, as well as day to day stressors such as not knowing if an
acute case of their chronic disease might abruptly occur without warning, such as with a sickle
cell crisis, hyperglycemia, or hypoglycemia. This makes it hard for the children to live a
childhood without worry. Some children may not be able to receive adequate quality healthcare,
which affects their treatment and how well they are able to do their daily activities. It is also hard
for others to relate to a child with a chronic illness if they have never experienced it themselves,
or have never been around someone dealing with the illness. The nurse has a responsibility to
address these health concerns and make sure that a child with a chronic illness can live his or her
life to the fullest. In order to ensure a quality life for the children, health promotion and health
prevention are extremely useful.
According to Harkness and DeMarco (2016) health promotion is an action or effort that
supports the well-being of individuals, groups, and communities by reducing risk of illness and
injury (p. 87). Preventive activities eradicate, eliminate, or reduce the impact of disease and
injury and promote health (Harkness & DeMarco, 2016, p. 88). Prevention of diseases is best
associated with primary, secondary, and tertiary prevention. Primary prevention maximizes
health and wellness such as education, immunizations, and exercise. Secondary prevention
occurs at the early stages of a disease and includes screenings such as mammograms, pap
smears, or lead level screenings. Tertiary prevention occurs with long-term management and
includes rehabilitation and treatments. The nurse may come across a variety of concerns in
regards to health promotion and prevention of diseases for a child with a chronic illness. The

CHRONIC ILLNESSES IN CHILDREN

nurses care should focus primarily on modifiable risks because not modifiable risk such as
genetics and natural disasters generally cannot be avoided.
A child with a chronic illness may be more susceptible to getting diseases if their chronic
illness causes immunodeficiency. Chronic illnesses in children that may cause a decreased
immune system would include: HIV/AIDS, velocardiofacial syndrome (VCFS) which has to do
with a chromosomal abnormality, and any type of cancer, but especially leukemia. With
HIV/AIDS, clients may be able to take highly active antiretroviral therapy (HAART) to enhance
their immune system (Goldstein & Morewitz, 2011). A child may not be interested in health
promotion behaviors if their illness is terminal. The child may wonder why it is important to
partake in healthy behaviors if they are going to pass away soon. If the child is terminal, the
nurse should educate the child that it is better to have a higher quality of life in their remaining
years versus a poorer quality of life. The child may also be afraid of getting immunizations
because of the fear of it hurting. Nurses should be honest with the children about what the
vaccination will feel like such as: It may sting a little, but it wont take long.
Some parents, especially now, are not vaccinating their children because of the myth that
it causes autism. Parents should be educated that according to the CDC, there is no link between
vaccines and autism, and that vaccines are generally safe (CDC, 2015). Another health
promotion concern for a child with a chronic illness may be that exercise can be difficult for
some of the children or they may be scared to participate. An example of this would be for a
child with asthma at risk for exercise-induced asthma with physical exercise. Children with
asthma may be worried to exercise, but they can and actually should exercise regularly (Saxton,
2011). The child should make sure they have their rescue inhaler nearby just in case of an
emergency. A balanced, adequate meal and proper nutrition may be difficult for children with
chronic illnesses due to financial barriers. This may be due to their excessive medical bills or due

CHRONIC ILLNESSES IN CHILDREN

to a parent being unable to work so that they can care for the child. It may also appear easier for
the parent, who is exhausted, to just purchase fast food instead of cooking. Parents should be
educated that a poor diet can cause a child to not grow and develop properly, worsening the
progression of the illness. A poor diet can even cause a decreased immune system in the child
(Ingleby, Oliver, & Winstone, 2014). If the parents have trouble purchasing nutritious foods, they
may be referred to the Supplemental Nutrition Assistance Program (SNAP).
For children with chronic illnesses, there are areas of concern for a nurse that would
address health promotion and prevention of disease. The nurse may focus on
vaccinations/immunizations, hand washing, balanced nutrition, and exercise.
A child with a chronic illness should make sure they are up to date on their
immunizations. As described earlier, certain conditions may increase a childs risk of
immunodeficiency making them more susceptible to becoming ill from a vaccine-preventable
disease. Another primary prevention example would include hand washing. Hand washing
should also be stressed, again, due to the childs potential decreased immune system. The number
one way to prevent the spread of germs and disease is for people to wash their hands. Young
children, especially, like to pick things up with their hands and put their fingers in their mouths.
Even from a young age hand washing should be stressed. A child should have a balanced
nutrition, as described earlier, health conditions can be directly correlated with a clients diet.
Poor diet includes not getting enough fruits, vegetables, carbohydrates, proteins, and fats to make
up a daily nutritious diet (Ingleby et al., 2014). A childs daily dietary recommendations with
depend on their age, gender, and physical activity. A child with a chronic illness should also be
involved in daily exercise. Children should do 60 minutes of physical activity daily. Aerobic
activity should make up a vast majority of the childs exercise. Muscle and bone strengthening
should also be added to this exercise regimen at least three times a week (CDCb, 2015).
Prevention Through Theory

CHRONIC ILLNESSES IN CHILDREN

A nurse can teach parents and children with chronic illnesses the importance of each of
these health promoting behaviors. Keeping the childs health at the best condition should be an
optimal priority for the family. Each of these primary prevention steps will help the family with
this. Betty Neumans theory called the Neuman Systems Model can be applied to reach these
goals. This focuses on the response of the client to environmental stressors. Primary health
promotion focuses on keeping stressors and the stress response from having a detrimental effect
on the clients body. An example of this would be educating a child with a chronic illness how to
manage their illness on a day-to-day basis. This would include information on how to properly
take medications, how to reduce day-to-day stressors, and what to do before an acute case occurs
such as educating them on how to use their rescue inhaler for asthma. Secondary health
promotion in Neumans model occurs after the client reacts to a stressor. It focuses on preventing
damage to the central core by strengthening internal lines of resistance. It occurs after client
reacts to the stressor. The intent is to regain system stability. In an acute case of their illness this
would be giving the child their medications to treat the acute case such as giving the child their
inhaler during an asthma attack. Tertiary health promotion in Neumans model occurs after the
client has been treated with secondary prevention strategies. The nurse should offer support to
the client after the child has been treated with the secondary prevention. An example of this is,
after a child is treated with their emergency medication during an asthma attack, the nurse would
reassure the child that they are going to be okay with relaxation and breathing techniques and
letting them know that they will get through this. Rehabilitation is also a key factor in the
recovery process for children with chronic diseases.
Rehabilitation
Medical rehabilitation can be defined as the restoration of a sick or disabled person by
therapeutic measures and reeducation to participation in the activities of a normal life within the

CHRONIC ILLNESSES IN CHILDREN

limitations of the persons physical disability (Rehab, 2015). The goal of rehab is to increase the
childs quality of life as much as possible. Quality of life refers to how an individual perceives
the quality of their daily functional status from a physical and psychological perspective
(Rehabilitation for Chronic Disease, 2013). Improvement of these states is a core goal of chronic
disease rehab. It is achieved through educating, counseling, and supporting to maintain health
behaviors (Rehabilitation for Chronic Disease, 2013). When evaluating the effectiveness of a
chronic disease rehab program, a measure of health-related quality of life should be included.
Most rehabilitation programs in the United States and United Kingdom have
rehabilitation teams that are invaluable in supporting participants through the rehabilitation
process. These teams consist of the family members, rehabilitation nurse, social workers,
physical therapist, occupational therapist, speech and language pathologist, psychiatrist,
psychologist, respiratory therapist, dietitian, audiology, and chaplains, along with many others
(Rehabilitation for Chronic Disease, 2013). A beneficial resource for rehabilitation in children
with chronic disease is the addition of home care visits. Home care visits, whether for acute care
or hospice and palliative care provide a way for children and families to receive care for their
chronic condition outside of the hospital setting (Medellin, 2015). This way the child does not
have the stressors that come with a hospital stay and can be more comfortable in the setting of
their own home, which is a more familiar environment.
There are pediatric facilities in the United States that design specialized treatment plans
for children with chronic illnesses and disabilities. Good Shepherd Rehabilitation, located in
Pennsylvania, is a good example of this type of program. The hospital uses a multidisciplinary
team approach to assess the child and determine his or her needs relating to medication,
positioning, equipment, nutrition, pulmonary management and community support services
(Chronic Illness Rehabilitation for Children, 2015). The treatment plan is personalized for each

CHRONIC ILLNESSES IN CHILDREN

child and is created based on clinical and evidence-based practice (Chronic Illness Rehabilitation
for Children, 2015).
The World Health Organization (WHO) discusses rehabilitation on the global level. It
states that rehabilitation and habilitation are instrumental in enabling people with limitations in
functioning to remain in or return to their home or community, live independently, and
participate in education, the labor market, and civic life (Disabilities and Rehabilitation, 2015).
Access to rehabilitation is crucial in decreasing the consequences of disease or injury, improving
health and the quality of life and decreasing the use of health services (Disabilities and
Rehabilitation, 2015). Although there is not significant global data on the need for rehabilitation
there is data on the national level that exposes large gaps in the delivery of and access to services
in countries that are not as financially stable (Disabilities and Rehabilitation). WHO also
discusses the topic of community-based rehabilitation (CBR). This type of rehab puts emphasis
on enhancing the quality of life for people with chronic disease and disabilities and their
families, meetings basic needs, and ensuring their inclusion and participation with the process
(Disabilities and Rehabilitation, 2015).
Government and Non-government Organizations
In the United States, health concerns are addressed in a variety of ways depending on
who the main target is and what the goal objective is. Healthy People 2020, the Commissioned
Corps of the U.S. Public Health Service, Casey Cares Foundation, and Brave Kids are just some
of the few governmental and non-governmental organizations to help general and selected
chronic illnesses in children. Promoting and facilitating healthy behavior are some of the best
ways to reduce the effects of chronic disease in children to ensure that the children have the
ability to live their lives to the fullest. Future health is also of utmost importance, as well. It is
necessary to make sure that the chronic illnesses are taken care of in a proper manner to ensure
that it does not affect their lives as much.

10

CHRONIC ILLNESSES IN CHILDREN

Healthy People 2020 identifies areas that need improvement in healthcare. It is a set of
ten year goals that are set forth in an effort to improve the health of Americans. The objectives
that they set forth are what they consider to be the high-priority health issues (Healthy People,
2015). They encourage collaborations among communities and sectors, empower individuals
toward making informed health decisions, and measure the impact of prevention activities
(Health People, 2015). They have a vision of being in a society where individuals have the
ability to live healthy and long lives.
The Commissioned Corps of the U.S. Public Health Service is also an important public
health program. The mission of the U.S. Public Health Service Commissioned Corps is to allow
protection, promotion, and advancement in the health, as well as the safety, of America (U.S.
Department of Health and Human Services, 2015). The values that they possess are leadership,
service, integrity, and excellence (U.S. Department of Health and Human Services, 2015). The
Commissioned Corps spend their time helping underserved and vulnerable populations.
Disease control and prevention, food regulation, drug regulation, biomedical research, mental
health services, and emergency response teams make up everything that the Commissioned
Corps takes part in (U.S. Department of Health and Human Services, 2015).
The Casey Cares Foundation is an uplifting way for chronically ill children to live a
carefree and fun life. Children who are fighting chronic illnesses do not get to enjoy their time in
school, making friends, and enjoying that atmosphere (Casey Cares Foundation, 2015). Casey
Cares Foundation provides support for this, and is very successful. Though the illness cannot be
cured, the children can have multitudes of support through this organization. They also support
families since they have the ability to understand what they are dealing with and the hardships
that a childs chronic illness can put on a family (Casey Cares Foundation, 2015).
Some organizations in the United States work specifically with the maintenance and
dealing of certain identified chronic illnesses. For example, Brave Kids is a newer organization

11

CHRONIC ILLNESSES IN CHILDREN

for children with Cerebral Palsy. This organization provides a community full of support, and
also gives information and resources for those with the condition (Brave Kids, 2015). They
believe that children with a chronic illness should have the ability to live life to the fullest and
not be held back. It created a social networking community that offers advice to parents and
guardians caring for the children (Brave Kids, 2015). With this type of organization that targets
a specific chronic illness, it can prepare families with the struggles being faced, and gives them
advice on how to deal with it and support their family network. A strong family network can
overcome anything. It acts as a support group for both the child and the family.
These are just a few of the many organizations that support chronic illnesses. There are
thousands of organizations that support different chronic illnesses, though, and are absolutely
necessary for ensuring that the child lives a full life. Brain tumors, lymphoma, blood disorders,
cancers, cystic fibrosis, etc. all have large support in the community and is very necessary and
successful in ensuring that the child lives a life without limitations. Overall, the organizations
provide a system for the children so that they understand that though they may have an illness,
they can still live day to day like a regular child. There are also services in the United Kingdom
that can supply a child with the support necessary.
Health Services
There are a number of services available to children who have chronic Illnesses in the
United Kingdom. These include special schools where children can go and have medical help
on hand at school, such as a school nurse being permanently based within the school. This is a
good option as parents can have peace of mind when their child leaves for school. In The UK,
the local Burroughs usually arranges transport for children to get to and from school.
However, sometimes parents and families also need a break from caring for their child
24/7. This is called respite care, which is short term specialized care for a child, giving their
parents a break and allowing them to spend time doing other things for themselves.

12

CHRONIC ILLNESSES IN CHILDREN

According to the Royal College of Nursing (2015) childrens health care is usually best
delivered through a multidisciplinary team, with the general practitioner at the center
collaborating with stakeholders, including local voluntary and authority partners, community
care and acute care (Royal College of General Practitioners, 2015). Children with chronic
illnesses often have a lot of appointments to attend, therefore the general practitioner would help
to direct children to the local services offered in that area. These may include meeting with other
children who have similar or the same conditions as them, so they can talk about their
fears/issues and also any worries they may have. This also provides a good opportunity to meet
other peers and socialize.
There are also specialist charities that provide support and awareness, such as the Well
Child Charity, which is a registered charity in England and Wales, which helps to support
children with life threatening and chronic illnesses. This charity enables children to leave
hospital and live life in their own homes, funding projects and research to ensure parents and
those who work in the childrens healthcare sector are better equipped to provide support to
children and young people with long term, complex healthcare needs (Well Child, 2015). It
influences the future of health, education, and social care policy to ensure it meets the needs of
families of seriously ill children and young people (Well Child, 2015).
In the UK, they have a service, which comprises of Community Childrens Nurses and
they visit the childs home and prevent the child from having to attend hospital unnecessarily
(Infopankki, 2014). The CCN teamvisit children with chronic illnesses and this helps to provide
the family with peace of mind that their child is being cared for by nurses, though not in a
hospital environment. In Finland, they have public health nursing, the nurses work in the
community, in schools, and in health centers (Infopankki, 2014).
Conclusion

13

CHRONIC ILLNESSES IN CHILDREN

As it can be seen from research, children with chronic illnesses play a major part in the
health care community on the national and global level. Nurses can be expected to see these
children in any health care setting. It is important to understand their view of health, concerns for
health promotion and prevention of disease, and rehabilitation in this specific population. The
nurse should be aware of a variety of health services available to the vulnerability group to help
offer resources and guidance for the family in need. As the nurse or healthcare worker becomes
more familiar with evidence-based research on various vulnerability groups within the
population they will subsequently become more successful in their practice.

References

Brave Kids. (2015). About Brave Kids. In Brave Kids. Retrieved from
http://www.bravekids.org/about-brave-kids/

Casey Cares Foundation. (2015). History/mission. In Casey Cares Foundation. Retrieved from

14

CHRONIC ILLNESSES IN CHILDREN

http://caseycares.org/?page=about

Centers for Disease Control and Prevention (CDCa). (2015). Vaccines do not cause autism.
Retrieved September, 30, 2015,
from http://www.cdc.gov/vaccinesafety/concerns/autism.html (Links to an external site.)

Centers for Disease Control and Prevention (CDCb). (2015). How much physical activity
do children need? Retrieved September, 30, 2015,
from http://www.cdc.gov/physicalactivity/basics/children/

Disabilities and Rehabilitation. (2015). Retrieved from World Health Organization:

http://www.who.int/disabilities/policies/en/

George, J. B. (2011). The Neuman systems model. In M. Connor (Eds.) Nursing

theories (pp. 338-384). New Jersey: Pearson Education, Inc.

Goldstein, M. L., & Morewitz, S. J. (2011). Chronic disorders in children and

adolescents. Springer Science & Business Media.

Infopankki. (2014). Childrens health. Retrieved from http:/www.infopannki.fi/en/living-infinland/health/children-s-health.

15

CHRONIC ILLNESSES IN CHILDREN

Ingleby, E., Oliver, G., & Winstone, R. (2014). Early childhood studies:
Enhancing employability and professional practice. Bloomsbury Publishing.

Medellin, G. (2015). UT Health Science Center Department of Pedatrics. Retrieved from

Children with Chronic Illness: a Focus on Home Management Issues:
https://www.hhsc.state.tx.us/about_hhsc/AdvisoryCommittees/STARKidsDocs/091014/U
T-Health-children-with-chronic-illness.pdf
Office of Disease Prevention and Health Promotion. (2015). About healthy people. In Healthy
People. Retrieved from http://www.healthypeople.gov/2020/About-Healthy-People
Public Health Agency. (2011). Childrens nursing (CCN) Service. Retrieved from
http://www.publichealth.hscni.net/directorate-nursing-and-allied-healthprofessions/nursing/childrens-nursing-ccn-service (Links to an external site.)
Rehab. (2015). Retrieved from Merrium-Webster: http://www.merriamwebster.com/medical/rehab
Rehabilitation for Chronic Disease. (2013). NSW Government Health , 2, 3-34.
Royal College of General Practitioners. (2014, March). Commissioning a good child health
service. In RCGP. Retrieved from
http://www.rcgp.org.uk/~/media/Files/CIRC/Child-and-Adolescent-Health/RCGP-Child/.
Saxton, J. (Ed.). (2011). Exercise and chronic disease: an evidence-based approach. Taylor
& Francis.
Transitional Rehab Program Chronic Illness Rehabilitation for Children. (2015). Retrieved from
Good
Shepherd Rehabilitation: http://www.goodshepherdrehab.org/transitional-rehabilitationprogram-chronic-illness-rehabilitation-children
U.S. Department of Health and Human Services. (2015). History. In Commissioned Corps of the
U.S. Public Health Service. Retrieved from http://www.usphs.gov/aboutus/history.aspx
Well Child. (2015). Our vision, mission & values. Retrieved from https://www.wellchild.org.
Uk/who-we-are/our-vision-mission-and-values/.