A randomized practical behavioural trial of curriculum-based advocacy training for individuals with traumatic brain injury and their families

Abstract

Primary objective: To test whether a curriculum-based advocacy training programme improves advocacy behaviour when compared to a matched group engaged in self-directed advocacy activities.

Research design: Community-based randomized practical behavioural trial.

Methods and procedures: Adults with moderate–severe TBI 1 or more years post-injury and their family members were recruited in Minnesota (4 years), Iowa and Wisconsin (each 3 years) and randomized into a curriculum-based or self-directed advocacy training group. Both groups met on the same day, at separate locations in the same city, once per month for 4 consecutive months.

Main outcomes and results: Pre–post written and video testimony were rated using the Advocacy Behaviour Rating Scale (ABRS). Mean ABRS scores increased after intervention in both groups (curriculum n = 129, self-directed n = 128), but there was no significant difference in this increase between groups. When groups were combined, a significant pre–post improvement in mean ABRS scores was observed.

Conclusions: Curriculum-based advocacy training was not superior to a self-directed approach in improving ABRS scores. A significant improvement in expression of an advocacy message was observed when intervention groups were combined. These findings suggest that bringing together like-minded motivated individuals is more important than programme structure or content in changing advocacy behaviour.

• Consumer advocacy
• patient advocacy
• rehabilitation
• local government
• government agencies

Acknowledgements

The authors are most grateful to David King, Jeff Nachbar and Michelle Gray of the Minnesota Brain Injury Alliance; Geoffrey Lauer, Natasha Retz, Brandi Jensen and Maggie Ferguson of the Brain Injury Alliance of IA; and Mark Warhus of the Brain Injury Alliance of WI for their dedication to this trial, without whom it could not have been completed.

Declaration of interest

No competing financial interests exist for any author. This study was funded by the Department of Education, National Institute on Disability and Rehabilitation Research, Mayo Clinic TBI Model System Center Grant H133A070013.