By Jeanie Davis

Children living with chronic illness often struggle with their treatment regimen. Depression and anxiety may be involved, as the child likely cannot cope. But that is just one component of the noncompliance picture, says Adrianne Alpern, PhD, a pediatric psychologist at Children’s Hospital of Orange County (CHOC Children’s), a pediatric healthcare system in California.

“Kids don’t live in a vacuum,” says Alpern. “Their family, their community, their school are all involved. Each part of the system contributes to compliance challenges.”

Psychological and medical trauma, as well as family issues, may be involved. The child may be embarrassed, forgetful, or distracted by competing activities. In some cases, the medication side effects, taste, or regimen complexity can be barriers. Insurance coverage and access to care also play a role in compliance, she explains.

Over the past 10 years, Alpern has worked with hundreds of kids with chronic illness who are not following their doctor’s orders. Compliance is complicated, she says. “The family has to do a lot. They must understand and believe in the child’s diagnosis, and believe that the treatment will help,” Alpern explains. “They have to understand the risk of not complying. They also have to understand the regimen, learn to use medical equipment, get prescriptions filled — and it all has to fit into their everyday lives.”

The medical condition adds an extra layer of stress to childhood, she adds. “All kids compare themselves to each other, which is part of being a kid. When there’s a medical condition on top of that, there’s a lot of embarrassment and shame.”

For example, children with diabetes frequently tell her “what a pain their treatments are, or how annoying or frustrating it is. They don’t feel like doing it,” Alpern explains. “They are embarrassed when they have to check blood sugar in front of friends or leave class early to see the nurse. There’s a lot of singling out, so they feel separate from their peers.”

That is why no one single intervention will work for compliance, she says. “We have to address this on the individual level and the family level, based on the child’s age, complexity, and discomfort of the regimen, access to medication, insurance copay, and/or how far they live from a pharmacy.”

Recognizing Red Flags

Healthcare providers, including case managers, must help children and parents overcome these barriers, she says. Children with asthma, diabetes, and other serious chronic diseases often are well-known to emergency providers, notes Alpern. The ED is a natural point to begin the conversation with parents. She advises case managers to know the red flags for noncompliance: parents who seem overwhelmed, a child with needle phobia, or a child who refuses to take medication.

Early intervention is key, she says. “The longer the challenges go on, the harder they are to treat. That’s why lot of medical clinics are now conducting routine depression and anxiety screening. Anxiety can be just as impairing and affect adherence as much as depression.”

Most of these patients have a history of trauma, including medical trauma, says Alpern. “When a child has an ambulance ride or a scary hospital procedure, or going through the process of being diagnosed, they are at risk for medical trauma. If they see everyone around them freaked out, or see their parents stressed like never before, that can result in medical trauma,” Alpern adds. “The child may think they’re dying. No one is telling them what’s going on; they don’t know it’s treatable. They can be traumatized by all of this.”

Trauma contributes to avoidance, she says. “It makes people want to avoid the thing that creates the trauma. They avoid memories of the trauma, so they avoid treatment. Some kids can’t think of the illness long enough to take medication because of the trauma.”

Trauma-focused cognitive behavioral therapy can be adapted for children or adults who have experienced medical trauma, says Alpern. The program includes “fun elements” that engage children. She adds, “A good child therapist should be able to make therapy somewhat fun.”

For hospital case managers, it is critical to look for clues that the family is struggling with adherence. Realize the parents will be guarded in what they disclose, as they have been lectured before. How providers communicate with children and their parents will affect medication adherence, she says.

“From the beginning, the language we use is so important,” Alpern says. “Being truly nonjudgmental is very important so the family will continue to open up and tell us what’s going on. They don’t want to feel judged or blamed. They are doing the best they can.”

In some cases, simplifying the regimen will help. Change a dosage from three times per day to one time per day, if possible. If the medication tastes bad, talk to the physician about switching to one that tastes better.

Do not use the word “compliant,” as it sounds judgmental, she adds. “The child feels, ‘They think I’m bad, they don’t like me.’” Instead, describe the problem as “trouble with the medication regimen.”

She advises following this approach in talking with children and families:

  • “Many people find it challenging to fit their medications into their daily lives. How much does that apply for you?”
  • “You have a lot on your plate. You have to balance school, soccer, and medication. Tell me about what makes it challenging to take your medicines.”
  • “Tell me about the last time you were not able to fit your medication in.”
  • Respond neutrally.

Neutral or positive response will help patients continue to be honest with medical providers, says Alpern. “If families or children feel any shame or guilt, they won’t feel comfortable telling you the truth.”

Giving the child choices about what is important to them is key, she adds. “You have to work with what the child is willing to do. There are ways to increase their willingness to do more with therapy over time, depending on severity and how supportive the family is.” Weekly family appointments are most effective, she adds.

Find a Mental Health Professional

A case manager can help find a mental health professional who can counsel the child, says Alpern. Typically, a nearby children’s hospital will employ a mental health professional who can provide therapy.

When adherence and mental health concerns coexist, there is a huge range of severity (from mild to severe), says Alpern. “Only the most severe cases would need hospitalization (in the event of life-threatening adherence), and only after several failed attempts to treat them in outpatient settings.”

If the child requires psychiatric medications, the situation becomes more complex. Finding a psychiatrist who will treat a child with complex chronic illness is not easy, says Alpern.

“Concerns about drug-drug interactions, and how psychiatric medication could influence the medical condition itself, often make it difficult to find treatment for the child,” she explains.

Outside of metro areas, it may be difficult finding mental health providers with experience working with children who battle chronic medical conditions, she acknowledges.

“If you don’t have experts in your community, create them,” advises Alpern. “Develop relationships with therapists in the community and train them in what you need, or encourage them to get training. Or, host an in-service to teach local therapists and psychologists about the illness you want to serve.”

The American Diabetes Association offers training for psychologists, she adds. “Partner with therapists in the community. Tell them, ‘If you go to this training, I will have a lot of patients for you.’”

Develop a simple one- or two-page handout about the medical condition and how therapists can help address the condition. Make that handout available to mental health providers in the community, and give it to each family when you make a referral.

Find out about local or regional hotlines for primary care providers and psychiatrists. Some hospitals offer psychiatry hotlines for local providers specifically to guide them on using psychiatric medication in complex cases.

“Adherence is on a continuum from more than 100% (someone who follows their entire regimen as directed or goes above and beyond the regimen) to 0% (someone who does nothing),” Alpern explains.

However, she adds, “A patient with moderate to severe depression who would benefit from psychiatric medication is still very different from a patient who would need to be hospitalized for 90 days.”

Some states and counties offer “wraparound programs” in which outpatient therapy is supplemented with in-home services, Alpern explains.

Case managers also could send inquiries through local and national listservs to find out more about resources, she advises.

Is Hospitalization Necessary?

Inpatient hospitalization is considered in the event of life-threatening adherence concerns and in the most extreme cases, says Alpern. “If a patient has life-threatening adherence issues and is at risk of immediate serious complications in very extreme cases, a few programs offer intensive ‘partial hospitalization programs’ in which kids spend most of the day there and then go home to sleep,” she explains. These programs generally accept children with chronic conditions and psychiatric needs.

In an emergency, an inpatient psychiatric unit located at a medical center may be able to admit the patient or provide guidance on referrals, she adds.

Cumberland Hospital for Children and Adolescents, located in New Kent, VA, is a general hospital with a certification in behavioral health and development. The hospital treats patients between the ages of 2 and 22 years with co-occurring medical and behavioral issues — such as diabetes, Crohn’s disease, sickle cell anemia, disordered eating, neurobehavioral issues, and morbid obesity — along with depression and anxiety. Average length of stay for this inpatient program is 120 days.

Cumberland Hospital also provides a residential treatment center for children with psychiatric issues who also may have medical diagnoses. Average length of stay for this program is six months to a year. Cumberland’s multidisciplinary approach helps create a lifestyle change in the child, says Alan Tager, Regional Clinical Liaison for the hospital.

“We receive med/psych referrals from all over country for children that have co-occurring medical and psychiatric issues,” he explains. “Medical hospitals do not want the behaviors, and psychiatric facilities are unable to manage the medical complexities. We stabilize their med/psych issues simultaneously, treating the child and providing education to the family so there is a smooth transition from our hospital to the home.”

Family therapy plays a significant role in outcomes, Tager says. “Many times, there are issues that are happening in the home that is on the mind of the child. The child does not have the coping mechanisms to manage the stressors. Hence, behaviors are projected both outwardly and/or self-injuriously. Family therapy helps bring these issues to the surface to create a pathway for healing.”

Tager cites data on children with Type 1 diabetes who are admitted to their facility for noncompliance. Outcomes studies show a 100% improvement in diabetes regimen adherence following 90 days post-discharge.

“There are no emergency room visits or admits related to diabetic ketoacidosis in our patients who complete the program,” says Tager. “Providers who refer patients to the hospital are invited to participate in treatment team meetings. They will receive monthly reports from each hospital discipline. Appointments are made prior to discharge so the child will go back to the local provider of care in their hometowns.”

Alpern believes a truly successful program must involve the family in face-to-face counseling sessions. She also believes that “inpatient care is simply not necessary for most children,” she adds.

“Most children with adherence challenges do not need inpatient care; only the most extreme cases require that type of program,” Alpern explains. “Many patients with adherence concerns and mental health needs can be successfully treated in outpatient settings if you can find the right provider.”

She also cautions against focusing solely on depression as a cause of noncompliance. “We cannot put this entire problem on depression. For this reason, we need an individualized approach to treating patients with adherence challenges. It’s not just about the person; it is about understanding the entire system around them.”

Health insurance and Medicaid will pay for the child’s mental health counseling and family therapy. “If the child needs weekly therapy and is at risk for unnecessary hospitalization and irreversible complications from illness, we can justify providing this higher level of care,” says Alpern.

She is hopeful for children and their families. “They are generally resilient; sometimes, they just need someone to help bring out their strengths.”