Self‑management refers to the daily behaviors that children and families use to care for a health condition. Adherence, a part of self‑management, describes how closely those behaviors follow the treatment plan recommended by the healthcare team.

Children and teens show effective self‑management and adherence when they consistently follow their treatment plan. This may include taking medications as prescribed, eating healthy foods, being physically active, attending medical appointments and avoiding unhealthy or risky behaviors, such as smoking, drinking or having unsafe sex.

Challenges with self‑management and adherence may occur when a child or teen:

• Takes medication less often than prescribed
• Has difficulty following therapy recommendations consistently
• Engages in activities they have been advised to avoid, which may increase health risks

Adherence is complex, and challenges may result from many factors, some of which are outside the control of the child and family.

Causes

Children and adolescents with chronic health conditions may face daily physical and emotional challenges. They may worry that their condition will worsen or experience pain related to the condition or its treatment. Children may feel different from their peers, and their family, school, and social schedules may be disrupted.

Sometimes, children and teens do not fully understand the purpose of self‑management steps, or treatment plans may be complex and difficult to maintain over time. In some cases, thinking or attention difficulties related to a chronic condition can affect how well a child follows the treatment plan. Periods of forgetfulness or busy schedules are also common.

As children grow and seek more independence, they may have more difficulty following a treatment plan consistently. Younger children may have trouble understanding the treatment plan or remembering its steps and may need reminders and repeated practice. Many children prefer treatment routines that help them avoid standing out among their peers. While adults may clearly see the health benefits of a treatment plan, children may experience the steps as unwanted reminders of their condition, which can make adherence more difficult.

Children, especially pre‑adolescents and adolescents, may feel pressure to fit in with their peers. When parts of the treatment plan are visible — such as taking medication, wearing a brace, missing school or avoiding certain foods or drinks — children may feel embarrassed or worried about unwanted attention. Adolescents who are developing independence and a sense of personal control may view medical instructions as a conflict with that independence.

Children and adolescents may need support from parents and caregivers to stay on track with a treatment plan. Younger children rely on adults to provide medications, guide therapies and reinforce healthy behaviors. Because of many family and life factors, adolescents may be expected to take on self‑management responsibilities before they are fully ready or educated to do so. However, adolescents also need emotional support and guidance from parents and other trusted adults. When caregivers are busy or unable to supervise care consistently, children may miss important parts of their treatment. In these situations, support from extended family members, family friends or a school nurse can be helpful.

Chronic health conditions can sometimes be associated with depression and pediatric traumatic stress, which may affect motivation, attention or comfort with treatment and make adherence more challenging.

Signs and symptoms

Challenges with self‑management and adherence may involve lapses in the treatment of a chronic condition. If a child shows frustration with the treatment plan, the problem may be obvious to parents. In other cases, challenges may not become clear until test results are reviewed at a follow‑up appointment.

Open communication and supportive parenting are important for the health of a child with a chronic medical condition. Regular conversations about how a child is feeling, how school and friendships are going, and how they are managing treatment can help parents recognize when more support is needed.

Depression, pediatric traumatic stress and other emotional challenges have signs and symptoms that parents and healthcare providers should watch for. Difficulty following a treatment plan may sometimes indicate emotional concerns, but more often reflects challenges such as misunderstanding the plan, attention lapses, social pressure or a child’s desire for independence.

Testing and diagnosis

Regular follow‑up appointments with the child’s medical team allow for ongoing monitoring of self‑management and adherence. A medical condition can sometimes worsen even when a treatment plan is followed. While some children may improve without consistent adherence, treatment recommendations are based on research, and the best chance for recovery comes when children and caregivers work together to follow the plan.

Open and honest communication between parents, children and the medical team is the best way to understand whether the treatment plan is being followed and whether any lapses may put a child’s health at risk.

Treatment

The steps needed to improve self‑management and adherence depend on a child’s age and support needs. Collaboration and open communication between caregivers and the child’s medical team are an important part of treatment.

Young children may benefit from consistent positive reinforcement, such as praise from a caregiver or small rewards. Parents may also need to adjust how they communicate with young children to reduce conflict and support cooperation. For example, asking, “Are you ready for your medicine?” is too easy for a child to answer with a flat “No!” Instead, ask, “Would you like the green pill first or the blue one?” This gives the child a sense of control without setting the stage for conflict.

Older children and adolescents may need support with planning, problem‑solving and navigating peer situations to maintain adherence across settings. Like younger children, teens benefit from feeling a sense of control over their condition and treatment as they develop independence. If mental health symptoms such as depressed mood or excessive fear arise, behavioral health interventions may be helpful. Cognitive behavioral therapy is one approach that can help teens adjust to living with a medical condition, improve adherence and address mental health symptoms.

Because caregivers play a critical role in supporting adherence, family‑based education or therapy may also be beneficial. If school‑related challenges or stigma are concerns, parents may need support in advocating for their child. Ongoing coordination with the medical team helps families manage these situations effectively.

Outlook

Some resistance to treatment is normal at all ages as children develop independence, and this may be more noticeable during adolescence. With guidance and support, children and caregivers can build healthy routines that adapt across developmental stages.

Follow-up care

When long term treatment is needed, continued attention to self management and adherence remains important. Behavior may change in adolescence, so a child who reliably follows a treatment plan through the early school-age years may begin to think or act differently as a teenager. Preparing teens for the transition to adult care and offering behavioral health support can help families manage treatment, coping and emotional well-being over time.

Why choose CHOP?

Children’s Hospital of Philadelphia (CHOP) has a skilled pediatric psychology and psychiatry team who work closely with medical specialists to recognize and understand the challenges with self-management and adherence. Your child’s CHOP care team works with families to address challenges and support adherence to the treatment plan.