A longitudinal study of support needs after severe traumatic brain injury

ABSTRACT

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.

KEYWORDS:

• Traumatic brain injury
• care needs
• support needs
• disability
• outcome

Acknowledgments

We acknowledge all the people involved in this study, including clinicians from the NSW Brain Injury Rehabilitation Units, the participants with brain injuries, and their families. An earlier version of this paper was written while Amanda Lane-Brown was enrolled at Charles Sturt University under the supervision of Professor Robyn Tate. We acknowledge the administrative support of Professor Tim Hannan, Charles Sturt University.

Declaration of Interest Statement

This paper represents a component of a larger study, the Brain Injury Outcome Study. The Brain Injury Outcome study was funded by the Lifetime Care and Support Authority. The authors alone are responsible for the content and writing of the paper.

Notes

1. CANS Level 4 (supports that are required daily, up to 11 hours) can be further subdivided into three categories, depending on whether the highest support need comes from Group A (CANS Level 4.3), Group B (CANS Level 4.2), or Group C (CANS Level 4.1). See CANS manual, available from www.sydney.edu.au/medicine-health/our-research/research-centers/john-walsh-center-for-rehabilitation-research.

Additional information

Funding

This work was supported by the Lifetime Care and Support Authority of New South Wales [N/A].