Adherence and Self-management in Children with Chronic Health Conditions

Self-management is the set of behaviors or actions that a child and family members are expected to follow to care for a chronic condition. Adherence, which is a subset of self-management, is the extent to which those behaviors match prescribed medical advice.

Children and adolescents are good at self-management and adherence when they consistently follow their treatment plan. This includes positive behaviors such as healthy eating, an increase in physical activity, attending appointments, avoiding unhealthy activities, such as smoking, drinking and unsafe sex and more. Conversely, they have self-management and adherence issues when they:

  • Don’t regularly take their medication.
  • Don’t consistently follow physical therapy recommendations.
  • Engage in activities they are advised to avoid, such as extreme physical exertion or other actions that may put their health at risk.

However, it should be noted that adherence is complex and issues can result from a number of reasons, some of which are outside the control of the patient.

Causes

Children and adolescents with chronic health conditions face a special set of physical and emotional challenges. They may be worried that their condition will get worse and may be dealing with pain, either from their condition or its treatment. Children may also feel “different” from their peers, and their schedules for family, school and social life may be disrupted. Sometimes, patients don’t fully understand the reasons for self-management steps, or treatment regimens may be complex enough that they’re difficult to maintain over time. Other times, cognitive problems associated with chronic health conditions can serve as barriers. Natural forgetfulness or hectic time periods can also be a challenge.

These emotional strains and practical obstacles, combined with the pushes and pulls of growing through the typical stages of childhood development, can lead some children and adolescents to be careless about, or even rebel against, their treatment plans.

Younger children may have trouble understanding the treatment plan and remembering all of its steps. They may need reminders and repetitive practice to make it part of their routine. Children have an emotional need to feel healthy and free of their condition. It may be clear to adults that the reason to follow the treatment plan is to improve the prospects for recovery, but to a child, the treatment steps may feel like a reminder of the condition. This, too, can cause children to skip parts of the treatment plan.

Children, especially adolescents and pre-adolescents, face social pressures to fit in and not stand out as different from their peers. When parts of the treatment plan are visible to others — such as taking medication, wearing a brace, missing school, or avoiding certain foods and drinks — this can cause embarrassment and social worry. It can be tempting for your child to skip treatment steps in order to look and feel “normal.” Adolescents are also developing a sense of independence and a need for personal control. Following a doctor’s or parent’s instructions can feel like a conflict with this need to be independent.

Children and adolescents need the support of parents and other caregivers in keeping to a treatment plan. Younger children rely completely on the adults in their life to give them their medications, to guide them in physical therapy, and to remind them about behavior to avoid. Adolescents may be expected to take on more responsibility for self-management before they are ready or have the sufficient education to do so. Adolescents also need the emotional support and guidance of parents and other adults to help them stay on track with their treatment plan. When parents and caregivers aren’t attentive and supportive, patients are at risk of missing important parts of their treatment.

Chronic health conditions can also be associated with depression, which can reduce the motivation and attention needed to follow a treatment plan, and with pediatric traumatic stress, which can cause a child to fear and avoid treatment.

Signs and symptoms

Self-management and adherence issues are lapses in the treatment of a chronic condition. If a child openly resists the treatment plan, the problem may be obvious to parent. Other times, a parent may not be aware of the problem until tests at a follow-up medical appointment show a setback in progress toward recovery.

Open communication and attentive, supportive parenting are important to the health of a child with a chronic medical condition. Regular conversations about how the child is feeling, how things are going at school and with friends, and how the child is handling the treatment can bring an adherence problem to light that might otherwise be hidden.

Depression, pediatric traumatic stress, and other emotional problems do have signs and symptoms. Problems with following a treatment may be an indication of other emotional issues, and parents and doctors should watch for these, but there is certainly no direct link. More often, self-management and adherence problems are due to poor understanding of the treatment plan, attention lapses, social pressure, or the child’s emotional need to feel independent and free of the condition.

Testing and diagnosis

Regular follow-up appointments with the child’s doctors may or may not uncover an issue with self-management or adherence. A medical condition can get worse even if the treatment plan is followed every day. A child can also recover from a condition without perfect adherence to the treatment plan. But treatment recommendations are based on research, and the best chance of recovery will come if the child and parent can work together to follow the treatment plan.

Open and honest communication between parent and child and between the family and medical providers are the best ways to tell if the treatment plan is being followed, and if not, whether the lapses are big enough to put the child’s health at risk.

Treatment

The steps needed to improve self-management and adherence will depend on the age of the child and what is driving the problem. Collaboration and open communication between parents and the patient’s medical team will drive the child’s treatment.

Young children may simply need more effective reinforcement of the desired behavior — praise from a parent or caregiver or a reward such as having a book read aloud. Parents may also need to work on their communication style with young children. Asking “Are you ready for your medicine?” for example, is too easy for a child to answer with a flat “No!” Asking “Would you like the green pill first or the blue one?” gives the child a sense of control without setting the stage for a battle.

Older children and adolescents may need help with planning, problem-solving, dealing with peers or self-control in order to keep to the treatment plan when at school or when a parent isn’t home. A teenager may need help in building a sense of control over the condition and its treatment that fits with his growing emotional need to be independent.

Cognitive behavior therapy can help with these issues. If emotional issues are involved, such as depression or excessive fear, psychological counseling may be needed.

Because the adults in the child’s life are so important in supporting the child’s efforts and reinforcing desired behavior, training or therapy to improve family communication and dynamics may be helpful. If there are issues with negative stigma or accommodation at school, parents may need help in becoming more effective advocates for their child. Ongoing coordination with the child’s medical team is important to helping the child manage issues.

Outlook

Some level of resistance to treatment is normal among children at all ages, as they seek to establish their individuality and independence, and this may become a more powerful force during adolescence. With expert guidance and counseling, children and parents can learn to adopt healthier behavior through the normal developmental stages of childhood and adolescence.

Follow-up care

If long-term treatment is needed for the chronic condition, ongoing attention to self-management and adherence is important. Behavior may change in adolescence, so a child who reliably follows a treatment plan through the early school-age years may begin to push back against it as a teenager. Some of this is a normal part of growing up. Preparing adolescents for transition to adult care can also be helpful. It is only if the child’s health is at risk that professional help may be needed.

Why choose CHOP?

Children’s Hospital of Philadelphia (CHOP) has a skilled team of child and adolescent psychiatrists who work in collaboration with other medical specialists to recognize and understand the causes of self-management and adherence problems. The family’s team at CHOP can work with the child and the parents to deal with these causes and help change behavior.