Abstract
Background: Psychosocial care remains an under-recognized and inconsistently supported component of comprehensive Sickle Cell Disease (SCD) management. Social workers often function as the primary behavioral health providers, especially for adult SCD patients. Anecdotally, they report widespread role confusion, lack of standardized infrastructure, and increasing moral distress when working on SCD teams. They may be called on to provide any service ranging from the most sophisticated behavioral therapy or health advocacy, to the least sophisticated instrumental social support or care coordination. Their roles within SCD care team remain poorly characterized, with limited data to guide their use, or to guide psychosocial staffing or care delivery for SCD. So, the National Alliance of Sickle Cell Centers (NASCC) formed the Social Work Advocacy Group (SWAG), comprised of social workers and psychosocial leaders from SCD teams across the U.S., partly to collect data to address this evidence gap, and partly to elevate the function and impact of SCD behavioral health team members. We report here partial results from our first NASCC SWAG self-survey of SCD social workers. These results focus on job training and job responsibilities.
Methods: NASCC SWAG conducted a cross-sectional analysis of 40 of its SCD social workers from diverse institutions. Fisher's exact tests were used to assess associations between license type, education, years of experience, and key work characteristics, including role alignment, pay structure, and revenue generation. p-values <0.05 were used to indicate statistical significance.
Results: The majority of respondents held a Master's degree (94.9%) and were licensed (84.2%). Those hired as Licensed Clinical Social Workers (LCSWs) or Licensed Independent Clinical Social Workers were the most prevalent licensed worker (51.3%). License type was associated with education level (p = 0.0513). The vast majority hired as LCSWs or LICSWs were licensed, whereas those hired as Licensed Medical Social Workers (LMSWs) and Licensed Social Workers (LSWs) were less often licensed (p=0.0006). Most social workers were salaried (85.7%), but only 22.2% reported generating billable revenue, and only one unlicensed respondent reported doing so. All workers without licenses were early career workers (0-2 years of experience), while licensed professionals often had more experience. Licensed workers reported working outside of their formal job descriptions more often than unlicensed workers. Early career workers most often reported working outside of their formal job descriptions. There was a trend toward more revenue-generating responsibilities for later-career workers. Only licensed professionals ever reported working at a level they perceived to be at the top of their license, but the differences between them and unlicensed professionals was not statistically significant.
Conclusions: Social workers on SCD care teams show significant variation in licensure, job descriptions, training, experience, and perceived support/maximization of their capabilities. This variety may reflect role fluidity in early-career stages. However, regardless of career stage, most report practicing outside the scope of their license. Despite their central role in behavioral and social patient care, social workers are not generating revenue, likely diminishing their perceived benefit and contributions. Our findings underscore the need to strengthen career development pathways and clarify professional roles for social workers in SCD care. Moreover, our findings reveal the large, untapped potential of social workers to finance and expand behavioral and supportive services for SCD patients. Strategic investment in licensing, scope alignment, and building billing infrastructure could enhance both SCD care quality and SCD program sustainability. Accordingly, NASCC SWAG continues activities to meet these objectives. This survey lays a foundation for future consensus guideline development and advocacy efforts to institutionalize multidisciplinary SCD behavioral health care models, support social workers to work at the top of their license, and leverage educational platforms to drive consensus-driven standards.
