Parent Toolkit: Thoughts, Feelings and Behavior for a Chronically Ill Child

Is this normal?

Kids who are dealing with medical stress may struggle at times with their thoughts, feelings and behaviors. Parents often wonder if what they are seeing in their child is “normal,” or if they should seek professional help. This handout describes some differences between what may be typical coping and when there may be problems requiring consultation with a mental health professional.

Is my child sad or depressed?

Sad

• Sad mood related to diagnosis, treatment, or hospitalization
• Sometimes tearful
• Connected to friends and family
• Continues to find joy and hope

Depressed

• Sad or irritable mood most of the time, without clear reasons
• Frequently crying without triggers, or not showing expected emotion
• Withdrawn, isolated
• Rarely shows joy or interest in activities that used to be fun

Is my child worried or anxious?

Worried

• Nervous about procedures but able to find ways to get through them
• Worries about health
• Worries about present and future because of medical condition
• Able to participate in medical treatments

Anxious

• Unable to follow through with procedures (shots, X-rays, blood draws) despite wanting to
• More general worries (about family members, bad things happening) that do not feel controllable
• Significant problems falling asleep or staying asleep through the night because of worries and thoughts about stress
• Behaves in ways that get in the way of treatment and may worsen condition, such as not taking medications to avoid dealing with illness and treatment, or becoming to upset to have blood drawn
• Complains about aches and pains more than what would be explained by medical problems
• Restlessness and fidgeting much of the time

What other problems might I see in my child?

• Depression and anxiety are two of the most common mental health issues in children, but you may see other symptoms such as behavioral outbursts.
• Acting out can be normal, but when it becomes a pattern of oppositional behaviors that get in the way of medical care and relationships, the behaviors may need to be treated.
• A child feeling scared about medical procedures is normal. Children who have experienced a medical procedure as life-threatening may develop more serious symptoms such as frequent nightmares, unwanted thoughts about the experience, high distress with any reminder of the memory, and avoidance of reminders, which could include avoidance of necessary medical procedures.
• It is normal for a child not to follow all medical care all the time. If a child begins to refuse medications and treatments, ignore medical recommendations, or hinder treatment, behavioral therapy addressing “adherence behaviors” could be helpful.

When should I become concerned?

Kids may have hard days. We become concerned when these hard days become more frequent than good days, or when they are showing big changes in how they function in their daily lives.

• School: Big change in grades or suddenly avoiding and refusing school
• Friends: Withdrawal from friends and activities and would rather stay home
• Home: Increased arguing with family members or withdrawal from family activities
• Medical: Fears or behaviors that get in the way of normal medical care or treatments

What do I do as a parent?

If you are concerned, an evaluation with a mental health professional will help figure out if your child needs treatment. You want to find a licensed mental health clinician, such as a psychologist or social worker, trained in working with children, adolescents, and families. Pediatric psychologists specialize in working with children and adolescents with medical conditions.

An evaluation is the first step toward treatment as recommended by the psychologist or social worker. Treatment options may include individual therapy, family therapy, parent training, group therapy, or a medication evaluation. See resources below for how to get started.

Additional resources

• Pediatric Mental Health Institute’s Outpatient Clinic, Children’s Hospital Colorado: Call 720-777-6200 to schedule an intake.
• Psychiatry Consultation/Liaison Team at Children’s Colorado: Ask your medical team for a consultation with the C/L Team, a group of psychologists and psychiatrists who work in the hospital with patients during inpatient admissions. They can do an evaluation and make referrals for other services outside of the hospital.
• Mental health resources in Colorado
• American Academy of Child & Adolescent Psychiatry
• Tips for talking to kids about suicide

Family Resource Assistance

Our Family Resource Liaisons are master’s level clinicians who are available to help individuals and families navigate the mental healthcare system by providing contact information for mental health resources in your community.

Family Resource Liaisons are available by phone at 720-777-4978, Monday through Friday, 8 a.m. to 6 p.m.

Check out our Parent Toolkit to get more resources for maximizing your child’s health.