“You ever had that sinking feeling in the pit of your stomach?

Or that feeling of everybody staring at you and dissecting you with their eyes? What

about the feeling of not wanting to move forward in life, or wanting to but feeling like your feet have begun to melt into the pavement and you’re frozen in

place? These feelings for a long time were a staple of my everyday life. There was a time where I forgot what being ‘normal’ meant, or what it felt

like to not feel like I was stuck in a rut... or like I was a piece of dirt on all my so called friends’ shoes. Of course, it wasn’t always like this. It was ‘the summer

of 1999’ when my world spun on an axis and I became sick. The diagnosis came after colonoscopies, gastroscopies, ultrasounds, MRIs, CT scans, and ahh,

screw it, I don’t remember half the tests. All I remember was I felt like I was going insane.

From the moment I became sick, my schooling was sporadic. On most days I would be lucky to attend one or two classes. In fact, the ladies in the office knew

me better than most of my teachers. When you’re a teenager, missing school for one day is difficult enough because you miss out on all the things that happen

in that day. But to be away for days, sometimes weeks at a time, puts a drift between friendships. Eventually I pretty much lost all my friends…

So I became isolated from the world.

Through a Chronic Illness Peer Support program, I began to accept that, while I wasn’t exactly normal, I didn’t know what ‘normal’ was anyway. You

see, many people forget we are all just adolescents wanting the same things that any healthy adolescent wants. We are still learning about ourselves, always

changing, always growing, so just because we have some form of an illness, we are no different. I have learned to control my illness more and accept it as a

part of me. Four years ago I was sick, depressed, shy and isolated. Now I’m still sick, but I’m no longer isolated. I’m not too shy anymore. AND I AM HAPPY.

If you asked me if I could go back and change the way my life led me, I’d tell you I wouldn’t because

strangely enough, a part of me feels lucky…” -Anonymous

 The Impacts of
Chronic Illness
in Adolescence

Rebecca Seymour and Kelsey Smith

Overview

– Chronic illnesses
– Examples of CI
– Themes in CI research
– Impacts on:
– Self
– Relationships
– Family
– School
– What we can do to help?
Examples of CI and
Themes in CI research
– Examples of CI… – Themes repeated in CI literature…
– Arthritis – Limitations
– Asthma – Body image
– Cancer – Isolation
– Cystic Fibrosis (CF) – Uncertainty
– Diabetes – Perseverance and grit
– Epilepsy – Fitting in
– Eating Disorders – Pain, danger, and death
– Heart disease – Acceptance and strength
– HIV/AIDS – Unpredictability
– Mental Health Disorders – Permanency
– Multiple Sclerosis (MS) – Autonomy
– Osteoporosis – Self-worth
– The list goes on and on… – Abilities and skills
Self

– Psychological Well-Being
– Attribution and Internalization
– Internal, global, stable
– Rumination and catastrophizing
– Acceptance
– Acceptance of illness is positively
correlated to daily well-being
– Implications of mood and health
– The future
– Moving away from home
– Discrimination
– Employment
– Pregnancy and genetic concerns
Relationships

– Peers, teachers, and intimate partners

– Isolation, exclusion, and social rejection
– Hiding
– Bullying
– Healthcare providers
– Seen, supported, and respected
Importance of family

– Parents
– Best allies
– Models of attitudes and behaviors
– Concerned parents
– Protective parents
– Controlling parents

– Perceived Child Vulnerability

Study
– Adolescent (AANX)
– Social anxiety
– Illness uncertainty and self-
doubt
– Consequences of elevated PCV
Importance of family
School Experience

– Adolescents with chronic illness may have…

– Higher risk for social isolation
– More academic concerns than their healthy peers
– Academic difficulties due to prolonged and repeated absences
– High rates of distress in school
– Worsening standardized test scores
– Poorer school experiences are linked to…
– Greater severity of illness
– Stronger treatment side effects
– Low SES
Knowledge and Belief about
Chronic Illness in Schools
– Students…
– School professionals…
– Disagreed that students with CI have:
– More barriers to educational achievement
– Need more attention in class
– Experience peer teasing
– Have problems preforming optimally in the
classroom.
– Difficulty receiving support
– Would benefit from collaboration
– Agreed that they themselves had enough
support to meet the needs of their students
BUT
– Felt like they were the least trained and least
supported personnel regarding the “more
serious” CI (CF, Epilepsy, Sickle Cell Anemia)
– Saw school professionals as not
knowing enough about the illness
– Felt as though school professionals
were imposing unnecessary
restrictions due to safety concerns,
reinforcing the feelings of isolation
and “being different”.
– Feared that teachers would evaluate
their performance using different
criteria than their peers
– Hid their diagnosis from school
personnel (if possible) to maintain
some sense of normality
– Felt like their chance for academic
success was “written off”
Now what?

– Coordinated and collaborative approach

– Strengthening social connections
– Mindfulness-Based Interventions (MBIs)
– Challenging negative thoughts
– Supporting Self-Management
– School-based intervention
– Detailed IEPs
– Grant-funded and government-initiated services
– In-service training
– Fostering a community of acceptance and appreciation of diversity
– Policy change

– Group counseling
– Chronic Illness Peer Support (CHiPs)

– Family counseling
– Advocacy 
ACTIVITY
TIME!
 Q & A?
SEYMOURL@DUKES.JMU.EDU
References

– Ahola Kohut, S., Stinson, J., Davies-Chalmers, C., Ruskin, D., & van Wyk, M. (2017). Mindfulness-Based Interventions in Clinical Samples of Adolescents with Chronic Illness: A Systematic
Review. Journal of Alternative & Complementary Medicine, 23(8), 581–589.

– Berger, C., Valenzuela, J., Tsikis, J., & Fletcher, C. (2018). School Professionals’ Knowledge and Beliefs about Youth with Chronic Illness. Journal of School Health, 88(8), 615–623.

– Brady, A. M., Deighton, J., & Stansfeld, S. (2017). Review article: Psychiatric outcomes associated with chronic illness in adolescence: A systematic review. Journal of Adolescence, 59, 112–123.

– Casier, A., Goubert, L., Gebhardt, W. A., Baets, F. D., Aken, S. V., Matthys, D., & Crombez, G. (2013). Acceptance, well-being and goals in adolescents with chronic illness: a daily process analysis.
Psychology & Health, 28(11), 1337–1351.

– Compas, B. E., Jaser, S. S., Dunn, M. J., & Rodriguez, E. M. (2012). Coping with chronic illness in childhood and adolescence. Annual Review of Clinical Psychology, 8, 455–480.

– Garnefski, N., Koopman, H., Kraaij, V., & ten Cate, R. (2009). Brief Report: Cognitive Emotion Regulation Strategies and Psychological Adjustment in Adolescents with a Chronic Disease. Journal of
Adolescence, 32(2), 449–454.

– Klein-Gitelman, M. S., & Curran, M. L. (2015). The Challenges of Adolescence, Mood Disorders, and Chronic Illness. JOURNAL OF PEDIATRICS, (6), 1192.

– Kohut, S. A., Stinson, J., Luca, S., Forgeron, P., Harris, L., & Ahola Kohut, S. (2017). Been There, Done That: The Experience of Acting as a Young Adult Mentor to Adolescents Living With Chronic
Illness. Journal of Pediatric Psychology, 42(9), 962–969.

– Lois, B. H., & Miller, A. L. (2017). Stopping the Nonadherence Cycle: The Clinical and Theoretical Basis for Dialectical Behavior Therapy Adapted for Adolescents With Chronic Medical Illness (DBT-
CMI). Cognitive and Behavioral Practice.

– Lopez, W.L.,, Mullins, L.L., Wolfe-Christensen, , & Bourdeau, T., (2008) The Relation Between Parental Psychological Distress and Adolescent Anxiety in Youths With Chronic Illnesses: The
Mediating Effect of Perceived Child Vulnerability, Children's Health Care, 37(3), 171-182,

– Lozano, P., & Houtrow, A. (2018). Supporting Self-Management in Children and Adolescents With Complex Chronic Conditions. Pediatrics, (Supplement 3), S233.

– Lum, A., Wakefield, C. E., Donnan, B., Burns, M. A., Fardell, J. E., & Marshall, G. M. (2017). Understanding the school experiences of children and adolescents with serious chronic illness: a
systematic meta-review. Child: Care, Health & Development, 43(5), 645–662.

– Olsson, C. A., Boyce, M. F., Toumbourou, J. W., & Sawyer, S. M. (2005). The Role of Peer Support in Facilitating Psychosocial Adjustment to Chronic Illness in Adolescence. CLINICAL CHILD
PSYCHOLOGY AND PSYCHIATRY, (1), 78.

– Pinquart, M. (2013). Self-esteem of children and adolescents with chronic illness: a meta-analysis. Child: Care, Health & Development, 39(2), 153–161.

– Pinquart, M., & Pfeiffer, J. P. (2015). Solving Developmental Tasks in Adolescents with a Chronic Physical Illness or Physical/Sensory Disability: A Meta-Analysis. International Journal of Disability,
Development and Education, 62(3), 249–264.

– Snelgrove, R., Wood, L., & Carr, K. (2016). Emerging Adults with Chronic Illness Pursuing and Enhancing Leisure. Leisure Sciences, 38(1), 34–49.

– Taylor, R. M., Gibson, F., & Franck, L. S. (2008). The experience of living with a chronic illness during adolescence: a critical review of the literature. JOURNAL OF CLINICAL NURSING, (23), 3083.