The Impact of COVID-19 on Pediatric Adherence and Self-Management

Jill M. Plevinsky, PHD; Melissa A. Young, PSYD; Julia K. Carmody, PHD; Lindsay K. Durkin, MS; Kaitlyn L. Gamwell, PHD; Kimberly L. Klages, PHD; Shweta Ghosh, PHD; Kevin A. Hommel, PHD


J Pediatr Psychol. 2020;45(9):977-982. 

In This Article

Medication Adherence and Healthcare Maintenance

Individual Factors

Aspects of physical health, psychological functioning, and cognitive processes that may ordinarily pose challenges for self-management and adherence among youth may be even more detrimental during the pandemic. A reduced focus on symptom monitoring and potential disruptions in routine medical care due to COVID-19 may result in a false sense of physical health or treatment effectiveness, thus leading to a potential lapse in treatment adherence (Hanghoj & Boisen, 2014). Psychological and behavioral problems are also associated with greater interruptions in pediatric adherence and self-management (Modi et al., 2012). While many are adjusting well to the stay-at-home orders, several experts indicate that there has been an increase in internalizing and externalizing symptoms in children and adolescents (Fegert et al., 2020). Deficits in cognitive processes (e.g., executive functioning) as a result of increased difficulties with mood (Robinson et al., 2015; Snyder, 2013) likely interfere with treatment adherence (Duke & Harris, 2014; Stern et al., 2018). Specifically, when youths' self-management responsibilities outweigh their cognitive capacity to successfully manage their treatment regimen, adherence and self-management behaviors suffer (Sonney & Insel, 2019). Additionally, increased variability in daily structure and routine during the pandemic may contribute to increased forgetting and decreased self-monitoring, both of which are very common barriers to adherence reported across almost all pediatric populations (Hanghoj & Boisen, 2014).

While youth and their families may have experienced some declines in functioning affecting adherence during this public health crisis, others may have noticed improvements in overall functioning that may support adherence and self-management. For one, the impact of daily stressors that may impact adherence such as missed school, participation in activities, and concerns about friends (Compas et al., 2012) likely have lessened due to social distancing guidelines. Additionally, at least one study among adults with asthma (e.g., Kaye et al., 2020) observed a positive change in rates of adherence during the COVID-19 pandemic, providing added support for improved adherence and self-management for a subgroup of individuals.

Family, Caregiver, and Community Factors

The impact of variability in daily structure and routine during the pandemic extends to caregivers and the family system. Potential changes within the family system, such as caregivers having to physically go into work or working from home while simultaneously providing childcare and/or filling the role of a classroom teacher, may place greater demands on youth to perform self-care tasks independently. In contrast, increased parental supervision and support in the home may benefit adherence and self-management. This may also be an opportune time to refine strategies to improve self-management in cases where parent support and supervision has increased. However, increased parental involvement may exacerbate difficulties in cases where parental over-involvement constrains the normative development of independent self-management, especially in adolescents and young adults who otherwise would be spending more time outside the home and taking more responsibility for their treatment regimen. Additionally, many children and adolescents receive support and medical care at school or via routine visits with in-home medical personnel to support self-management and adherence, yet in many cases these supports were abruptly withdrawn due to school closings and other COVID-19-specific precautions.

Healthcare System Factors

During the COVID-19 pandemic, a host of medical procedures and treatments deemed non-critical, including healthcare maintenance appointments (e.g., physicals, routine follow-ups) were canceled (Center for Disease Control and Prevention, 2020). Consequently, youth who were previously receiving adjunct therapies (e.g., physical, occupational, or psychosocial therapies) experienced an abrupt stop and/or prolonged interruption in services. Under typical circumstances, such large gaps in treatment would be considered nonadherence. Moreover, the rapid adjustment to telemedicine was especially complex for pediatric healthcare systems, requiring medical centers to quickly adapt to using new technologies to provide care (Patel et al., 2020). Despite the gradual reopening of healthcare services, COVID-19-related precautions (e.g., limited capacity for face-to-face appointments, additional time to sanitize equipment, extended wait times, postponing of appointments) continue to pose threats to effective adherence and self-management. These rapid deaccelerations in care delivery likely contributed to unprecedented levels of nonadherence caused by healthcare system factors. Additionally, families with youth who are immunocompromised may now be fearful of returning to the hospital for fear of contracting COVID-19 (Headley, 2020). Overall, families' experiences with lapses in insurance coverage, the burden of the cost of these services, limited accessibility to in-home medical personnel, and worry about returning to routine in-person care during the pandemic are likely impacting pediatric disease management as well.