Psychological complications of chronic illness

While it’s important to help your child take charge of her own health, kids and adolescents do not always make the best medical decisions when left to their own devices. (For example, a young diabetic is more likely to make bad food choices than good when out with friends). For this reason, you are a necessary, active participant in helping your child develop a healthy lifestyle that successfully manages her illness while allowing her to gain an optimal amount of independence. 

Children’s Hospital Boston works with kids and their families to address the psychological impact of a chronic illness and any related medical experiences. Our team includes child and adolescent psychiatrists, psychologists, social workers and other mental health professionals who provide comprehensive evaluation, treatment, support and education for patients and their families. 

We deliver this type of care in both outpatient and inpatient settings: 

Outpatient – The Behavioral Medicine Clinic

Children’s Behavioral Medicine Clinic works with children who are being treated on an outpatient basis at the hospital—as well as their families—so they can understand and manage their feelings about:

• being sick
• facing uncomfortable procedures
• handling pain
• taking medication
• preparing for surgery
• changes in friendships and family relationships
• managing school while dealing with an illness
• grief and loss

Inpatient – The Psychiatry Consultation Service

Children’s Psychiatry Consultation Service is comprised of expert and compassionate mental health professionals who understand the unique circumstances of hospitalized children and their families. The team provides several services, including:

• short-term therapy for children admitted to one of our inpatient units
• parent and sibling consultations
• teaching healthy coping skills for the whole family
• educating members of the medical treatment team about the relationship between physical illness and psychological distress

The Psychiatry Consultation Service works with children who have been admitted to the hospital and their family members. A child’s treating clinician can make a referral to the service. 

In both settings, treatment is solution-focused and family-oriented. We emphasize building upon family strengths and resources and developing practical strategies for coping with medical stressors in the best way possible. A primary goal is preventing (and. ideally, resolving) any emotional or behavioral difficulties related to the child’s chronic illness and treatment.

Therapy will most often be 8-10 sessions, and may include one or a combination of the following methods:

Psychotherapy ("talk therapy")
Talk therapy is the mainstay of mental health treatment at Children’s, and is designed to help your child learn how to cope with his feelings. Coping strategies taught in therapy can include:

• identifying and talking about feelings, worries and relationships affected by the child’s illness
• stopping automatic negative thoughts (“I’ll always be a ‘freak’ because of my illness”)
• relaxing the mind and body
• finding activities that are engaging and comforting
• discovering and appreciating positive things about themselves
• defining the child as much more than the illness

Using these strategies, your child will be able to:

• work through difficult medical experiences
• build healthy relationships
• identify stressors in his life and ways to avoid them
• build strong self-esteem and hope for the future 

Children’s also offers therapy for parents, siblings and other family members. This allows the entire family to take part in the child’s treatment, and to learn how to serve as a consistent, solid source of support for the child during her illness. Family therapy also gives parents and siblings an “outlet” for voicing and addressing their own worries, fears and stresses.

Psychiatric medication
If your child’s psychological stress does not adequately respond to talk therapy, your clinician may recommend adding an antidepressant or anti-anxiety medication to the treatment plan. These medications can help your child feel more relaxed, motivated and comfortable while working on coping skills in therapy. 

Medication is not a “standalone” treatment; Children’s always considers it part of a two-prong approach, with psychotherapy as a necessary component. Our Psychopharmacology Clinic is devoted to helping children, families and clinicians decide whether medication might be a useful part of treatment.

Commonly prescribed antidepressant medications include: 

SSRIs (selective serotonin reuptake inhibitors, which adjust the levels of serotonin—a chemical that regulates mood—in the brain)

• Celexa
• Lexapro
• Luvox
• Prozac
• Zoloft 

Atypical antidepressants (drugs that impact both serotonin and other chemical messengers in the brain)

• Cymbalta
• Desyrel
• Effexor
• Remeron
• Serzone
• Wellbutrin 

Commonly prescribed anti-anxiety medications include: 

• Alprazolam (Xanax)
• Lorazepam (Ativan)
• Diazepam (Valium)
• Clonazepam (Klonopin)
• Diphenhydramine (Benadryl)
• Hydroxizine (Vistaril)

 Less commonly prescribed medications that can also treat fear and anxiety include: 

• Buspirone (BuSpar)
• Zolpidem (Ambien) 

No single medication is effective in all children. Families should expect a trial-and-error process that can last weeks, or even months, as doctors find the drug regimen that works best. 

Since 2004, the U.S. Food and Drug Administration has placed a black warning label on antidepressant medications. The warning label states, in part:

“Antidepressants increased the risk of suicidal thinking and behavior (suicidality) in short-term studies in children and adolescents with Major Depressive Disorder (MDD) and other psychiatric disorders. Anyone considering the use of [Drug Name] or any other antidepressant in a child or adolescent must balance this risk with the clinical need. Patients who are started on therapy should be observed closely for clinical worsening, suicidality, or unusual changes in behavior.”

If your child is prescribed any psychiatric medication, your clinician will ensure that there is no contraindication with his medications or other treatments for his chronic illness. Your doctor will carefully go over the specifics of the drug with you, as well as any potential side effects you should watch for.

Our team has years of experience in managing the use of psychiatric medications in children of all ages and with a wide variety of conditions. We will closely monitor your child for any sign of a negative response to the medication, and are always here to address any concerns you may have. 

Learn more about psychiatric medications.

Support and education
Children’s mental health professionals also offer ongoing support for patients and their families by:

• educating children, families and other clinicians about the relationship between physical and mental health
• preparing the child and family for medical and surgical procedures
• consulting with schools and primary care providers

Coping and support

The ups and downs experienced by a child—and family—living with a phobia can feel overwhelming. In addition to the information provided here, you may find comfort and support from the following resources:

Patient and family resources at Children’s

Children’s Center for Families is dedicated to helping families locate the information and resources they need to better understand their child’s particular condition and take part in their care. All patients, families and health professionals are welcome to use the Center’s services at no extra cost. The center is open Monday through Friday from 8 a.m. to 7 p.m., and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information.

The Advocating Success for Kids (ASK) Program at Children’s provides multidisciplinary evaluation, referral and advocacy services for children under age 14 with behavioral, emotional, learning or developmental problems, either at home or at school. ASK works with children who receive their primary care either at Boston’s Bowdoin Street Community Health Center, Martha Eliot Health Center or Joseph M. Smith Community Health Center or at Children’s Primary Care Center. For more information about ASK, please call 617-355-4690.

The Experience Journal was designed byChildren’s psychiatrist-in-chief David DeMaso, MD and members of his team. This online collection features thoughts, reflections and advice from kids and caregivers dealing not only with physical illnesses like asthma and diabetes, but also with such mental health conditions as ADHD and depression.

Children’s Integrative Therapies Team provides a number of services for hospitalized children, their families and their caregivers, including:

• massage therapy
• acupuncture
• yoga
• therapeutic touch

Visit our “For Patients and Families” page for what you need to know about:

• getting to Children’s
• finding accommodations
• navigating the hospital experience

Helpful links

Please note that neither Children’s Hospital Boston nor the Department of Psychiatry at Children’s unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

Helpful links for parents and families

• Band-Aides and Blackboards: For Parents of Chronically Ill Children
• Parenting a Chronically Ill Teen
• The Chronically Ill Child in School

Helpful links for teens

• Band-Aides and Blackboards: For Teens with Chronic Illness, their Siblings and Friends
• Chronically Ill Teens Share Their Stories

Helpful links for younger children

• Band-Aides and Blackboards: For Kids with Chronic Illness, their Siblings and Friends