A longitudinal study of support needs after severe traumatic brain injury

Objectives The need for support following traumatic brain injury (TBI) is well documented. Yet the evidence is limited about the types of support required, how support needs change over time, and the effect of level of disability. This study addresses this limitation in the evidence. Method Longitudinal design with a state-wide inception cohort of 131 people with severe TBI. Support needs were assessed using the Care and Needs Scale at 3- and 5-years post-trauma. Results By 3 years post-trauma, the level of disability on the Disability Rating Scale stabilized (49.6% low disability, 39.7% moderate disability, 10.7% severe disability). By contrast, support needs were high at 3 years (95%) and 5 years (94%). The most common type of support need was psychosocial (95%), then instrumental activities of daily living (IADL; 63%). The most frequently occurring intensity level of support need was every few days (24%). A significant increase in the total number of support needs occurred between 3 and 5 years, particularly for IADL supports. At the individual participant level, intensity of support changed for 53% (increase in 35% and decrease in 18%). Disability subgroups showed different patterns of support needs. Conclusions Support needs after severe TBI are prevalent, varied, and change over time, which have implications for care-giving and service delivery.