Transitions to Postsecondary Education in Young Adults with Hemoglobinopathies: Perceptions of Patients and Staff

Abstract

Supplemental Digital Content is available in the text.

Introduction:

The transition from high school to postsecondary education can be challenging for adolescents and young adults (AYAs) with chronic health conditions. AYAs with hemoglobinopathies, including sickle cell disease, are a particularly vulnerable group whose academic performance is impacted by unpredictable disease symptoms. AYA with hemoglobinopathies may require academic accommodations to promote postsecondary success; however, accessing appropriate supports can be complicated.

Methods:

Given these complexities, a multidisciplinary team in a pediatric outpatient clinic designed and implemented a standardized intervention to support AYA with hemoglobinopathies in navigating the transition to postsecondary education. A quality improvement (QI) project was initiated to support the referral of all eligible patients with hemoglobinopathies to postsecondary accessibility offices. This article will describe the development of the intervention and present key findings from qualitative interviews with patients (ages 18−19) and postsecondary accessibility office staff about the implemented resources as an initial step of an ongoing QI project. We used thematic analysis to identify themes across interviews with both groups of stakeholders.

Results:

Key themes across both groups of interviews highlighted the benefits of the intervention, including (1) knowledge of available services, (2) registering early with appropriate documentation, and (3) self-advocacy.

Conclusions:

The preliminary qualitative findings validate the importance of embedding discussions about the transition to postsecondary education into routine clinic appointments for AYA with chronic health conditions. Clinical implications of this ongoing QI project for health care providers working with AYA with chronic health conditions will be shared.