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Running head: LIVING WITH CHRONIC DISEASE AS AN ADOLESCENT

Living with a Chronic Disease as an Adolescent

Leander Beaver, Marissa DiBuccio, Andrea Garcia,

Abby Langan, Alexis Lee, Marissa Schneeloch

James Madison University

Fall, 2018

Living with a Chronic Disease as an Adolescent

Abstract
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The present text explores the concept of adolescents diagnosed with chronic illnesses and

how these diagnoses impact their overall emotional and mental health. Living with a chronic

illness, at any age, is a challenge. Adolescence is an extremely vulnerable time, a period of rapid

growth and developmental changes, which places them at a high risk for impaired socialization,

coping mechanisms and poor mental health. This text analyzes adolescents living with Asthma,

Type I Diabetes, Cerebral palsy, Sickle cell anemia, Cystic fibrosis, Cancer, and Congenital heart

problems. The goal of this review is to increase awareness within the healthcare community to

improve patient care of adolescents living with chronic illness. With this information, healthcare

professionals can implement more effective care interventions in order to better target adolescents’

emotional health and overall quality of life. This literary review identified a widespread need for

a quantitative tool to better understand the data.

Introduction

Adolescents living with a chronic illness are a unique portion of the population. Roughly

“three out of 10 adolescents (31 percent) between the ages of 12 and 17” in the United States are

living with a chronic illness that greatly impacts their life (Park, 2013, p. 1). The developmental

period for adolescence is a stressful and emotionally insecure time as teens search for ways to

shape their own identity. Living with a chronic disease creates even more challenges to their

emotional health such as missing school, social events, and feeling misunderstood due to their

intense medical needs. This literary review explores the different impacts on adolescents’

emotional health for those living with a chronic illness, as well as what interventions exist to help

support these adolescents.

Synthesis of the Literature


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The adolescent population is a unique group due to their already present vulnerability as

they search for their identity. Living with a chronic illness can make adolescence more difficult

as they try to adapt and cope with their additional health burdens (Ferro & Boyle, 2013).

According to both studies conducted by Ferro & Boyle and Iosifyan & Arina & Flahault, it was

conclusive that those suffering from chronic illness had poor self-concept and lacked effective

coping mechanisms. These findings place teens at increased risk for developing mental health

issues including depression, anxiety, and substance abuse (Ferro & Boyle, 2013; Iosifyan & Arina

& Flahault, 2016). In the study conducted by the Journal of Cross-Cultural Psychology, it was

found that adolescents with asthma who used avoidant coping strategies, such as ignoring their

condition completely or restricting their lifestyle choices because of fear, showed higher

depression and anxiety scores (Iosifyan et al., 2016). In Goldberg’s & Wiseman’s study, it was

found that education on proper coping skills, to both the parent and adolescent, helps to minimize

emotional distress and help the parent manage their child’s health effectively (2016). While

findings for Ferro & Boyle noted the risk for mental health issues as only mildly significant, it still

identified the potential for a lower quality of life, long-term negative mental health effects, and a

need for a stronger universal data tool for measuring mental health (2013). In this sensitive

developmental period, any insult to an adolescents’ security, whether it be physical or emotional,

can show profound effects on their overall mental health.

For adolescents with a chronic illness, there are additional obstacles to socializing with

peers, building self-esteem, and emotional development. The Journal of Adolescent Health stated

that one in five students live with a chronic illness, many of whom reported that it restricted their

everyday activities and impaired their socialization (Denny et al., 2013). Due to the impact of

chronic health conditions, adolescents suffer from poor socialization and as a result have a
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tendency to avoid social activities. This leads to “poor school attendance or lack of participation

in recreational peer-group activities” (Denny et al., 2013). Similarly, in a personality trait study

of adolescents living with congenital heart disease (CHD), the majority of those with CHD had

lower scores of extraversion compared to their healthy peers likely due to “lower activity levels”

and “lower positive affectivity” (Rassart et al., 2013, p. 327).

Currently, many studies are exploring both the availability and effectiveness of resources

in assisting children with chronic illnesses on their emotional health. A prevalent resource

identified throughout the research was the use of peer mentoring. In a study conducted by Douma

& Scholten & Maurice-Stam & Grootenhuis, the goal of peer mentoring is to “prevent and/or

reduce psychosocial problems by teaching the use of active coping skills with [cognitive

behavioral therapy] techniques” (Douma et al., 2018, p. 2). Conducted through an online forum,

the study discovered that the use of proper and early interventions in children and adolescents

show improved overall psychosocial functioning (Douma et al., 2018). In addition, the Journal of

Health Psychology explored the effectiveness of peer mentoring through video chats with older

adolescents who also suffer from a chronic illness and found that there are benefits to any child

regardless of their current social support. The study stated that “peers who have a similar lived

experience offer a unique understanding… and thus provide social support that is qualitatively

different to the social support provided by others in one’s [usual] social network” (Ahola et al.,

2018, p. 796).

Throughout the literature researched, there were three main inconsistencies found. Some

articles did not take into account gender differences of the participants in the studies. This created

a gap in the data, by not accounting for the difference in socialization aspects and coping skills

that different genders experience during adolescence and puberty. Moreover, the literature
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collected was from a wide spread of geographical locations. As a result of geographical

inconsistencies, cultural impacts and findings were not considered when analyzing the

adolescents’ attitude towards their emotional well-being. The final inconsistency among the

sources is that there was no standardized method utilized in collecting data related to assessing

levels of socialization and coping skills. By not using a standardized assessment tool, self-concept

was found to have significant variability when analyzing the data findings.

Among the articles researched, limitations and threats to validity were present. First, all of

the literature reviewed were qualitative studies with relatively small sample sizes. In addition, the

participants were not randomized, and did not reflect widespread demographics. A majority of the

studies were interview based; a limitation to this was the presence of the parents in the interview

room, which may have skewed the honesty and accuracy of the child’s responses.

Conclusion

In conclusion, this literature review explored how living with a chronic disease impacts the

emotional health of the adolescent patient population. It was determined that adolescents suffering

from chronic illness have a tendency to withdraw from social activities and have overall poor

socialization skills in comparison to their healthy peers (Denny et al., 2013). This literary review

aimed to increase healthcare providers’ awareness of the impairment on social development that

can come from frequent hospitalizations and long-term care. A perfect reflection of this need for

provider awareness was determined in a study conducted by Pediatric Blood & Cancer that stated,

“existing literature suggests that children and adolescents… request peer support to promote

coping, and [that] this is an unmet need” (Christiansen et al., 2015, p.726).

Recommendations
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Throughout the literary review, it was discovered that a system is needed to quantitatively

collect and analyze the data regarding the impact of chronic illness on the emotional health of

adolescents. Until an established method is developed, health care providers must increase their

awareness of coping issues experienced by adolescents with chronic diseases. By increasing

awareness, health care providers will be able to offer adolescents with chronic illnesses the

appropriate resources and identify early signs of ineffective coping. It is also recommended to

increase the availability and use of peer mentoring programs as they have been found to be

extremely helpful on adolescents emotional health (Douma et al., 2018; Ahola et al., 2018).

Lastly, in addition to peer mentoring, children living with a chronic disease may benefit from

volunteerism. The International Journal of Nursing Studies found that adolescents with Sickle

Cell Disease who have the opportunity to volunteer may benefit through increased feelings of self-

esteem, self-worth, and improved social interactions (Poku & Caress & Kirk, 2018). In conclusion,

it is recommended that further studies be performed to develop a standardized assessment tool,

promote healthcare provider awareness, and increase implementation of peer mentoring groups

and volunteer opportunities for all adolescents suffering from chronic disease.
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References

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