The Role and Functions of Social Workers in Rare Disease Management in Harare, Zimbabwe

Rare diseases impose complex, lifelong burdens that extend beyond biomedical treatment into the psychological, social, and financial domains of patients and families. Social workers are widely recognised in high-income countries as core members of multidisciplinary rare disease teams, yet little empirical evidence exists on how this role is enacted in low-resource, Global South settings. This study examined the roles and functions of social workers involved in rare disease management in Harare, Zimbabwe, using a qualitative descriptive design informed by the Social Ecological Model. Data were collected through semi-structured interviews with 140 social workers and allied professionals, drawn through purposive and snowball sampling from a target population of 400, and analysed thematically. Findings show that social workers perform the complete functional catalogue recognised in international literature: psychosocial support (37.1 percent identified this as their primary role), case management and coordination (41.4 percent reported strong involvement), advocacy (30.0 percent routine, 35.7 percent reactive), and referral and resource linkage (35.7 percent). However, visibility within multidisciplinary teams remained only moderate for the majority of respondents (38.6 percent), signaling a persistent recognition gap. The study concludes that Zimbabwean social workers perform the same functions documented in well-resourced systems, but do so as individually compensate, unscaffolded labour rather than institutionally supported practice. Policy and practice recommendations are offered to formalise the social work role within rare disease care structures in Zimbabwe and comparable settings. Keywords: Rare Diseases; Social Workers; Psychosocial Support; Case Management; Multidisciplinary Care