Medically Ill Children & Adolescents

Mental health considerations in children with severe or chronic medical illness can be sorted into the following categories:

Mental health diagnoses or conditions which preceded the medical illness and which present challenges for the management of both.

  • An 11-year-old with severe hyperactivity and impulsivity who develops renal failure and must stay still for hours of peritoneal dialysis.
  • A 16-year-old with bipolar disorder who develops rheumatoid arthritis, and significant drug-drug interactions occur between needed psychotropic and arthritis treatment options.
  • A 9-year-old with separation anxiety who receives a leukemia diagnosis and whose mother must leave her in the hospital at times to care for her infant sister.

Mental diagnoses which are more likely to arise after the onset of a severe or chronic medical illness.

  • Depression develops at higher rates in children and adolescents with asthma, diabetes mellitus, cancer, and other illnesses than in medically well children and adolescents.

Mental health and behavioral symptoms which impact medical outcomes by adversely affecting adherence to treatment or participating in self-care activities.

  •  A 16-year-old athlete develops osteosarcoma in his femur and must give up soccer, a primary source of identity and efficacy for him.  He becomes increasingly despondent, withdrawn, and unwilling to actively participate in treatment.  

Expected, normative stages of emotional and psychological development which take on increased risk in children with severe or chronic medical illness.

  • A 13-year-old wants to spend more time with friends than with family and does not want to be seen dosing insulin when she and her friends go out for high-calorie coffee drinks.

The impact of a child’s severe or chronic medical illness on the emotional and psychological well-being of parents, siblings, and other affected caregivers.

  • A 12-year-old develops viral myocarditis and heart failure requiring a prolonged hospital stay.  His parents are stretched to their limits trying to keep their jobs, address previously existing marital issues, and attend to their son’s medical needs.  The 7-year-old sister is sent to live with an aunt for the duration and feels abandoned, afraid, angry, and guilty.

Self-Management

Self-management is the set of behaviors that people engage in as part of living with a chronic condition.  Self management includes tasks such as symptom monitoring, medication adherence, goal-setting, problem-solving, and managing sleep, nutrition and physical activity. Self-management improves health outcomes through improved adherence to the treatment plan and by building the patient's capacity to address challenges and solve problems.

In pediatric medicine, support of self-management is at least a triadic relationship among the clinician, patient, and a caregiver.  Self-management support ideally meets the child flexibly at each developmental stage, providing new explanations and task-shifting to the child as new skills and capacities emerge.  

A child's capacity for self-management, as well as that of the family, is shaped by modifiable and non-modifiable factors at the individual, family, community, and healthcare system level (Lozano & Houtrow 2017).  The pediatric clinician has a key role in helping to identify conditions in which modifiable factors are impeding child and family self-management.  

Chronic illness and the treatment of chronic illness can impede child development by reducing opportunities for exploration, risk, and autonomy.  Children may be encouraged to be passive and compliant to make the treatment process easier for those providing care.  Lozano and Houtrow (2017) suggest that clinicians need "standardized approaches and tools to do the following: assess the self-management skills of youth and families, assess modifiable environmental influences on chronic conditions, collaboratively set self-management goals, promote competence and eventual autonomy in youth, share the responsibility for selfmanagement support among nonphysician members of the health care team, and leverage community resources for self-management support."

Psychiatric Comorbidity Management

Routine, age-appropriate screening for mental health disorders is recommended for all pediatric patients with chronic illness.  A challenge in screening and assessment is sorting out symptoms which may be attributable to a psychiatric diagnosis and to the chronic disease process. 

Children, adolescents, and their families will vary in their interest and motivation in addressing mental and behavioral concerns in addition to managing the chronic or serious illness.  Additional appointments, travel, time and vulnerability may be barriers to care.  The pediatric clinician can play a critical role in providing education about the mental health condition and treatment options and assessing the burden of the mental health condition and motivation for treatment over time.  Co-management of mental health disorders in the pediatric primary or specialty care setting may make treatment more accessible and acceptable to patients and families already taxed with chronic illness management (Knight et al 2016).

The use of psychotropic medications in pediatric patients with chronic illness must include a careful consideration of the chronic illness and its treatment on pharmacokinetics, pharmacodynamics, and drug-drug interactions.  

Supporting Families

Most children and families will adapt to a child’s illness, remaining cohesive and resilient. They develop coping strategies including problem solving, positive thinking, and acceptance around the illness and the challenges of treatment.  

Many families, however, will have times when their emotional, social, or financial resources are strained in the course of caring for their child of chronic illness.  The pediatric clinician can support families of children with chronic conditions.  A first step is simply acknowledging the challenges that family is facing and checking in on family well-being.  The American Board of Pediatrics Roadmap Project begins with the question, “How are you doing?”.  The emphasis in the question is in really wanting to know the answer.  

"It looks like it was a lot of work to bring Sean in for his pulmonary testing today through all that snow.  You do an amazing job.  How are you doing?"

Simply hearing that their role in caring for their child is acknowledged and appreciated, being addressed as a member of their child’s treatment team and being seen as an individual with strengths and needs can make a difference for parents.  Further referrals to resources are an appropriate next step, if needed.

Resources

The Roadmap Project  American Board of Pediatrics - Roadmap to Resilience, Emotional and Mental Health: supporting pediatric patients with chronic conditions, their families, and the medical teams who care for them.

Coping Club  A library of patient-generated videos for kids by kids to help them better understand their medical condition and handle stressors associated with their illness and hospitalization.

References

Knight, A. M., Vickery, M. E., Muscal, E., Davis, A. M., Harris, J. G., Soybilgic, A., Onel, K. B., Schanberg, L. E., Rubinstein, T., Gottlieb, B. S., Mandell, D. S., & von Scheven, E. (2016). Identifying Targets for Improving Mental Healthcare of Adolescents with Systemic Lupus Erythematosus: Perspectives from Pediatric Rheumatology Clinicians in the United States and Canada. In J Rheumatol (Vol. 43, Issue 6, pp. 1136–1145). https://doi.org/10.3899/jrheum.151228

Lozano, P., & Houtrow, A. (2018). Supporting Self-Management in Children and Adolescents With Complex Chronic Conditions. Pediatrics, 141(Supplement_3), S233–S241. https://doi.org/10.1542/peds.2017-1284H

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 and Development, 43(5), 645–662. https://doi.org/10.1111/cch.12475

Malas, N., Plioplys, S., & Pao, M. (2019). Depression in Medically Ill Children and Adolescents. Child and Adolescent Psychiatric Clinics of North America, 28(3), 421–445. https://doi.org/10.1016/j.chc.2019.02.005

Miller, V. A. (2018). Involving Youth With a Chronic Illness in Decision-making: Highlighting the Role of Providers. Pediatrics, 142(Supplement_3), S142–S148. https://doi.org/10.1542/peds.2018-0516D

Pergjika, A., Weissberg-Benchell, J., & Perez-Reisler, M.  Collaborating with Inpatient and Subspecialty Pediatrics.  In: Dulcan's Textbook of Child and Adolescent Psychiatry, Third Edition.  Washington, DC: American Psychiatric Publishing, Inc.  2022. 

Saxby, N., Ford, K., Beggs, S., Battersby, M., & Lawn, S. (2020). Developmentally appropriate supported self-management for children and young people with chronic conditions: A consensus. Patient Education and Counseling, 103(3), 571–581. https://doi.org/10.1016/j.pec.2019.09.029