Adolescence is time of great change for children and parents. Teens enter a stage of intensified identity development and a need to separate from parents. Caregivers not only contend with these changes but are also balancing the need for greater self-sufficiency and acceptance of responsibility from their adolescent children with keeping their child safe. All families struggle with this, but for families of teenagers with a chronic illness which require daily maintenance tasks, the process is more complex.
Examples of daily disease management tasks are blood glucose monitoring with diabetes, chest physiotherapy with cystic fibrosis, and monitoring of daily activity with sickle cell disease. With advances in disease understanding and treatment, more and more children with chronic illnesses are living into adolescence and on to adulthood.
Parent-child relationships remain central to teens during this developmental stage. Our systematic review focused on how the changing dynamics of parent-child relationships can support or hinder the successful transition to competent disease-management for teens. Interest in the topic sprang from the lead author’s personal experience providing healthcare to adolescents. As children, some patients were doggedly adherent to daily illness management tasks, but as teenagers, these tasks were willfully ignored. A systematic approach to searching science databases, sorting through hundreds of articles, and synthesizing the findings of select research was completed.
Several themes were discovered. Teens face challenges in adopting self-management responsibility. Understanding and managing complex symptoms, communicating with others about the disease, and formulating strategies to integrate disease management into the overall framework of one’s life were some of them. In contrast, some adolescents, either through naivete or wishful thinking, reject treatment tasks and purposefully downplay the potential impact of non-adherence.
Parents often struggled to cede control to teens, feeling the conflicting demands of protecting the child while fostering independence. A pattern of incompetent teen push-back on parental involvement, non-adherence to healthcare tasks, becoming overwhelmed, succumbing to parental control, followed by a renewed effort to self-management was found in some studies. While the overall literature review found ongoing parental involvement key to successful adolescent self-care, the level of involvement changed from the parent as the primary manager to the parent as the knowledge resource and collaborator. When parents supported adolescent autonomy, independent disease management improved. Monitoring, checking-in, and providing logistical assistance, such as filling prescriptions, allowed for continued parental involvement while bolstering teenage independence.
Conflict can arise with teens sometimes feeling pestered and parents not fully trusting their child’s abilities. Ongoing dialog permitted teens to utilize parents as a resource without feeling nagged, and permitted parents to share their store of disease of knowledge, typically accumulated over several years of managing their child’s disease. In a collaborative approach to care, adolescents showed more robust feelings of self-efficacy and parents had more faith in their offspring’s grasp of the nature and complexity of disease management.
For families of adolescents with chronic illness transitioning from parent directed to independent disease management, the transition process is incremental, non-linear, heavily negotiated, and one component of the teen’s overall assumption of adult responsibilities. While research on this topic is sparse, one conclusion can be drawn from this systematic review of the literature. An on-going, collaborative parent-adolescent dialog within a larger quietly supportive relationship is key to a successful transition to self-care.
These findings are described in the article entitled Adolescents with chronic illness and the transition to self-management: A systematic review, recently published in the Journal of Adolescence.