“She makes me feel that I'm not alone”: Linkage to Care Specialists provide social support to people living with HIV

Background: The Wisconsin Department of Health Services has implemented an intervention aimed at increasing linkage and retention in medical care among people living with HIV (PLH).  Full-time “Linkage to Care Specialists” within HIV clinics and community based organizations provide intensive, short-term patient navigation and case management for PLH who are newly diagnosed, recently released from incarceration, or not securely engaged in medical care. Qualitative evaluation of the pilot phase was conducted to assess initial successes and areas for improvement.

Methods: Sixteen clients from the pilot phase of the intervention were interviewed about services Specialists provided, program successes, and experiences with barriers to medical care. Data were coded for key themes using MaxQDA software.

Results: Participants’ relationships with their Specialists emerged as a major unifying theme. Comfortable and close relationships with Specialists served as motivation to adhere to medical care, mitigated negative feelings associated with HIV-related stigma, and resulted in increased comfort with medical care and positive health outcomes. Specialists provided several types of social support, including affirmation and encouragement, empathetic companionship, and provision of information, referrals, and coordination of direct services.

Conclusions: Initial positive effects demonstrated by LTCSs are balanced against the costs of small caseloads in comparison with traditional case management. Future research should examine cost-effectiveness of brief intensive case management, screening options for intensive case management, and personalization of health care and other psychosocial services delivery systems.