Abstract Background Sickle cell disease is a genetic, pain-riddled condition layered with physical, psychological, and systemic inequity challenges. Despite patients with sickle cell disease now having a longer life expectancy compared to the1970s, psychosocial support for this population remains limited. A National Alliance of Sickle Cell Centers Social Work Committee decided to define pertinent psychosocial care delivery topics and barriers to establish a starting point for developing consensus recommendations. These topics were outlined to provide foundational knowledge for new social workers and medical providers in prioritizing foci for establishing psychosocial standards of care in sickle cell disease. Identified areas include assessing infrastructural support, provider work characteristics, and perspectives. Methodology Individual input from National Alliance of Sickle Cell Centers social workers was gathered to identify frontline obstacles in delivering psychosocial care. The topics that garnered the most votes for their impact on how psychosocial care is given and/or received were recorded. Results Psychosocial issues that impede sickle cell disease care were summarized via literature-based descriptions and summarization boxes. Social workers across alliance sites agreed upon significant contributors that shape how psychosocial care is given and/or received. These include: 1) systemic barriers (inequities in healthcare, lack of funding prioritization, and therefore specialized providers and psychosocial staff, especially at adult centers), 2) social work role misunderstanding (medical team unawareness of individual psychosocial provider responsibilities/capabilities and confusion around caseloads). This report serves as a precursor to setting guidelines and standards to advance psychosocial care.
Moorman et al. (Thu,) studied this question.