A necessity of disease management: Unpacking young adult couple experiences of accessing care in the management of sickle cell disease.

Abstract

Introduction: This medical family therapy-informed study explores the experiences of young couples living with sickle cell disease (SCD) as they engage with the health care system. Recognizing the critical role of disease management and health care provider interactions, the research focuses on how these couples access care and manage illness together. Young adults with SCD are particularly vulnerable to poor disease management, reduced health-related quality of life, and frequent episodic pain crises. While prior research has examined individual challenges in disease management, limited attention has been given to the shared experiences of young adults with SCD and their partners in navigating the health care system. This study addresses that gap by capturing couples' experiences through a systemic lens.

Method: Between August 2021 and February 2022, 18 individuals (nine couples) were recruited from SCD support groups and virtual platforms across the United States. Individual interviews were conducted and analyzed using transcendental phenomenology to explore both individual and shared perspectives on health care navigation.

Results: Two overarching themes and five subthemes emerged, reflecting how partners' perspectives influence the couple's shared experience of navigating the health care system.

Discussion: By incorporating both individual and shared perspectives, this study contributes to the development of collaborative health care strategies for young adults with SCD. It highlights the importance of improving disease management and health care interactions to enhance the well-being of couples living with chronic illness. (PsycInfo Database Record (c) 2025 APA, all rights reserved).