Young adults must navigate a period of healthcare transition, facing new logistical and economic barriers in the adult healthcare system. Moreover, many young adults change or lose insurance. While this transition is difficult for all young adults, those with sickle cell disease (SCD)—who typically have a high need for healthcare utilization—are particularly vulnerable.
As a result, despite advancements in SCD care, the mortality rates of young adults with SCD have increased over time. This study, published in the Journal of Transcultural Nursing, investigated why this disparity exists through a social and psychological lens.
Interviews with thirteen Black young adults with SCD led to the identification of eight major themes surrounding their care: a need for accessible support; assistance needed with personal and professional goal-setting; incongruence among their expectations, experiences, and preparation; spiritual distress; stigma; a need for collaboration; appreciation for caring providers; and isolation.
Concerning their need for support, participants noted that having peer and community support could improve their quality of life. Unfortunately, even when community support groups were in place, they were often inaccessible. In addition, assistance with personal and professional goal-setting from healthcare workers was usually approached through a lens of longevity, a luxury not afforded to patients with SCD.
Regarding the incongruence among their expectations, experiences, and preparation, participants felt they were not adequately educated to navigate the adult healthcare system. Furthermore, the participants’ experiences with spiritual distress and stigma highlighted how SCD felt like a barrier to religious institutions, socialization, and self-worth. Together, these factors compounded their existing health problems to make navigating the healthcare system even more challenging.
Participants also emphasized the importance of being able to collaborate with their healthcare providers and how not having a say in their care could disincentivize them from returning. Finally, isolation was noted as a major factor impacting young adults with SCD. Many participants expressed a desire for connection with their peers with SCD, a connection which they felt was only facilitated in childhood.