Chronic Illness in Children

1Running 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

2CHRONIC ILLNESSES IN CHILDREN

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 well-

being 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

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 isn’t the same risk factor as what causes asthma. The

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

WHO’s definition of health that “health is a state of complete physical, mental, and social well-

being 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 diagnosis-

Kids4Kids Videos from Mott Children’s 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 people’s 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 you’re 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

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

nurse’s 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 won’t 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

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 child’s 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 child’s 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

client’s 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 child’s 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 child’s exercise. Muscle

and bone strengthening should also be added to this exercise regimen at least three times a week

(CDCb, 2015).

Prevention Through Theory


A nurse can teach parents and children with chronic illnesses the importance of each of

these health promoting behaviors. Keeping the child’s 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 Neuman’s 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 client’s 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 Neuman’s 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 Neuman’s 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

limitations of the person’s physical disability (Rehab, 2015). The goal of rehab is to increase the

child’s 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

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.

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 child’s 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

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.

According to the Royal College of Nursing (2015) children’s 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 children’s 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 Children’s Nurses and

they visit the child’s 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 nurse’s work in the

community, in schools, and in health centers (Infopankki, 2014).

Conclusion

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 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). Children’s health. Retrieved from http:/www.infopannki.fi/en/living-in-finland/health/children-s-health.

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/UT-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). Children’s nursing (CCN) Service. Retrieved fromhttp://www.publichealth.hscni.net/directorate-nursing-and-allied-health- professions/nursing/childrens-nursing-ccn-service (Links to an external site.)

https://www.hhsc.state.tx.us/about_hhsc/AdvisoryCommittees/STARKidsDocs/091014/UT-

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


Rehab. (2015). Retrieved from Merrium-Webster: http://www.merriam- webster.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-rehabilitation- program-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/.

http://www.merriam-

https://www.wellchild.org/

http://www.usphs.gov/aboutus/history.aspx

http://www.goodshepherdrehab.org/transitional-rehabilitation-program-

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