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


RESULTS
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.
Leith
Katherine H
KH
Center for Health Services and Policy Research, Norman J. Arnold School of Public Health, University of South Carolina, SC, USA. leith@sc.edu
Phillips
Lyn
L
Sample
Pat L
PL
D000328:Adult; D001291:Attitude of Health Personnel; D001930:Brain Injuries / Q000534:rehabilitation*; D003266:Continuity of Patient Care / Q000458:organization & administration; D003695:Delivery of Health Care / Q000458:organization & administration; D005190:Family; D005260:Female; D017144:Focus Groups; D006266:Health Education; D006297:Health Services Accessibility / Q000458:organization & administration; D006301:Health Services Needs and Demand / Q000458:organization & administration*; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D010344:Patient Advocacy; D010353:Patient Education as Topic; D026684:Personal Autonomy; D013022:South Carolina