Exploring the service needs and experiences of persons with TBI and their families: the South Carolina experience

Abstract

Primary objective: This article presents the results of four focus groups with persons with traumatic brain injury (TBI) and their families living in South Carolina. The objective was to learn what participants perceive their service needs to be and where they experience service gaps in the existing system of TBI services.

Methods and procedures: Four focus groups were conducted. In each group, a convenience sample of persons < 5 years post-injury and family members responded to 10 semi-structured questions.

Main outcomes: Qualitative content analysis revealed overwhelming consensus regarding the need for (1) early, continuous, comprehensive service delivery; (2) information/education; (3) formal/informal advocacy; (4) empowerment of persons with TBI/families; and (5) human connectedness/social belonging.

Conclusions: Persons with TBI and families in South Carolina experience the service system as unorganized, uneducated, unresponsive and uncaring. Effective strategies are needed that link services into an ongoing continuum of TBI care, increase TBI-specific education and awareness and foster social re-integration.