Are Mid to Late Adolescents with Asthma Ready for Transition of Care? A Qualitative Study

Abstract

This qualitative descriptive study explores experiences and perspectives of mid-to-late adolescents about growing up with asthma, and the roles of parents and providers as they transition. Purposeful sampling was used to recruit and enroll adolescents aged 16–20 years with asthma. Forty-one adolescents participated in a focus group or individual interview, and content analysis was conducted to analyze the data. The mean age of participants was 17.7 years, the majority (56%) of whom were Black. Themes that emerged included concerns about becoming an adult with asthma and its self-management, parental involvement, and communication with providers. Adolescents felt burdened by asthma, few considered becoming adults with asthma, and their future outlook was pessimistic with concerns related to worsening symptoms, inadequacy in symptom self-management and limitations on career choices due to asthma. Deficiencies in self-management were noted, parents still played major roles in adolescents’ asthma care, and transition of care was seldom discussed with the providers. Mid-to-late adolescents with asthma are inadequately prepared for transition of care, and parents and providers insufficiently engage adolescents in the preparation. Parent, provider, and adolescent partnership is critical to achieve adolescent readiness for independence in asthma management and to ensure proper asthma care continuity post transition.

Parents’ Experiences and Perceptions of Healthcare Transition in Adolescents with Asthma: A Qualitative Study

“…Parents’ thoughts about their teens’ impending healthcare transition can be summarized in three ways. First, the most common response was that, similar to their teens [ 9 ], many parents simply have not thought about the transition, despite the aforementioned negative feelings. Second, few parents held a positive outlook based on assumptions that their teens would ‘grow out of asthma’ or become better at managing asthma as they get older.…”

“…This concern primarily stems from their teens’ limited preparedness to manage asthma independently. Unlike their teens who expressed high confidence in managing asthma independently [ 9 ], parents were worried about their teens’ lack of knowledge, skills, or emotional maturity to self-manage asthma, and their lifestyle choices that could potentially aggravate the condition.…”

“…Conflicts arise when the parents’ desire to stay involved collides with teens’ desire for a “hands-off” approach [ 9 ]. Interestingly, contrary to most teens denying any conflicts with their parents in our previous report [ 9 ], varying degrees of disputes were reported by their parents regarding asthma management.…”

“…Nonetheless, frequent interruptions in asthma care have been reported in young people undergoing healthcare transitions [ 3 , 4 , 5 , 6 ]. To date, transition readiness in adolescents with asthma has not been studied extensively, but available research has reported suboptimal transition readiness [ 4 , 7 , 8 ] and transition-induced emotional stress among adolescents with asthma [ 4 , 9 ].…”

“…Typically, transitions tend to exaggerate the vulnerability of individuals and families [ 10 ]. During the uncertain and stressful time of transition, adolescents often rely on parents for their support and guidance [ 8 , 9 ]. Nonetheless, parents’ roles and needs during the care transition of adolescents with chronic conditions have been overlooked in research [ 11 ].…”