Approximately 30% of youth have been diagnosed with a chronic physical health condition. Some of the more common conditions, such as diabetes, asthma, obesity, and epilepsy, are treated with medications, specific diets, and other therapies. Daily steps or health behaviors taken to manage a chronic illness and its co-occurring conditions are referred to as self-management. These self-management behaviors may encompass sleep, nutrition, physical activity, and social domains as part of a medical treatment plan. Another component of self-management is taking medication as prescribed. Managing a chronic condition can be overwhelming for families, and forgetting is one of the most common reasons why youth don’t take their medication. In fact, pediatric studies show that 50% of youth do not consistently follow their medical treatment plan.
What Adherence Is
According to the World Health Organization, adherence is “the extent to which a person’s behavior corresponds with agreed recommendations from a healthcare provider.” This can include taking medications as prescribed or following a specific diet, among others.
Why Adherence Is Important
Adherence has been linked to several health-related outcomes, including disease severity, health-related quality of life, health care utilization, and vitality. When youth and families do not follow the medical regimen, they are more likely to experience worsening of symptoms, poorer quality of life, hospitalization or emergency care, and even death.
Who is at Risk for Non-adherence
Contemporary models place emphasis on the interaction of individual, community, health care, and family systemic factors influencing adherence. And, social determinants of health, including socio-economic status, race/ethnicity, and caregiver education, have been associated with adherence. For example, families with lower income, lower caregiver educational attainment, and those who identify with racial or ethnic groups that have been marginalized are at greater risk of non-adherence to their medical treatment plans. In addition, studies have consistently shown that rates of non-adherence increase from 50% to 65-90% in teens. As youth develop, they desire more independence and control over their lives. They also spend more time engaging in social activities. While this is normal, these developmental changes can contribute to barriers to adherence.
How to Address Non-adherence
Behavioral health treatments have been shown to be effective in improving youth and family adherence to medical treatment plans. Strategies such as goal setting, self-monitoring, psychoeducation, reminders, problem solving, motivational interviewing, performance feedback, and rewards are common components of these interventions. A recent systematic review suggests that activity limitations associated with chronic physical conditions may contribute to isolation and depression in youth; therefore, increasing engagement in activities that a youth enjoys and is able to participate in may be an important target of intervention.
Utilizing MAP to Support Youth with Chronic Physical Conditions
The risk of behavioral health symptoms is higher in youth with a chronic physical health condition compared to those who do not have one. The MAP system, one of the products offered at PracticeWise, can equip providers to deliver evidence-informed treatment. MAP stands for Managing and Adapting Practice and is a toolkit that helps providers select, build, organize, and implement behavioral health treatment based on the most up-to-date research.
The research database, PWEBS, contains almost 2,000 peer-reviewed papers representing the scope of evidence for youth behavioral health treatments. An advanced search of PWEBS reveals that some of these papers incorporate youth with chronic physical conditions (e.g., diabetes, obesity, inflammatory bowel disease). Searching common concerns such as anxiety, depression, sleep, and disruptive behaviors reveals the frequent practices or strategies used in these treatments (e.g., Cognitive, Goal Setting, Psychoeducation, Rewards, etc).
In the MAP library of Practice Guides, providers can access 2-page, step-by-step instructions on how to deliver these particular strategies. While PWEBS does not currently include adherence as a searchable target, there are a number of Practice Guides that can assist providers in addressing non-adherence in youth with chronic physical conditions. For example, as mentioned earlier, self-management of a chronic condition encompasses sleep, nutrition, physical activity, and social behaviors. The Psychoeducation: Health Promotion Practice Guides – Caregiver and Child versions cover how to provide psychoeducation around these specific health behaviors. The library also includes Practice Guides that cover other strategies commonly used in evidence-based adherence interventions, such as Self-Monitoring to track adherence to the treatment plan, Goal Setting to clarify specific adherence goals, and Problem Solving to identify barriers that get in the way of following the treatment plan and choose a solution. In addition, Motivational Enhancement focuses on increasing reflection and commitment related to behavior change and can be helpful in situations in which the family or youth is resistant to changing their daily routine. Finally, the Activity Selection guide helps providers assist youth in identifying activities that they enjoy and making a plan to engage in them. For youth with a chronic physical condition, it is important to avoid any activities that might be discouraged based on the medical treatment plan (e.g., swimming unsupervised for youth with epilepsy). Given the increased risk of isolation, focusing on social activities may be important.
If providers desire a more comprehensive explanation and guidance on how to provide any of these practices, they can access the On-Demand Learning courses (e.g., General Psychoeducation includes the health promotion behaviors).
Resources
- Learn more about the MAP system
- Browse the On-Demand library for courses
- Previous blogs available from PracticeWise focus on health behaviors related to sleep, nutrition, screen time, and physical activity
Summary Blurb: In this post, we explore 1) what adherence is, 2) why adherence is an important consideration in youth behavioral health, and 3) how MAP supports the provision of behavioral health care to youth with chronic physical conditions.
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About the Author
Janelle Wagner, Ph.D., serves on the Professional Development Team as an Associate Trainer and Senior Consultant for PracticeWise. Learn more about Dr. Wagner on the PracticeWise team page.
