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August 08, 2014

Studies look at program to teach self-advocacy to individuals with brain injury

A brain injury can affect every aspect of a person’s life, and require the individual and/or a family member to advocate for services and acceptance as the individual attempts to re-enter social, vocational, and community roles. Unfortunately, the very skills required for successful self-advocacy— communication, problem solving, organization and emotional control— are frequently disrupted by the injury.

With funding from the Craig Hospital Foundation, Craig’s research department is conductingtwo pilot research studies on the efficacy of an intervention program designed to empower people with skills of self-advocacy.

The Self-Advocacy for Independent Life (SAIL) program is a series of four workshop sessions spread over six weeks for individuals with traumatic brain injury or brain injury. Developed and taught by Lenny Hawley, LCSW and research clinician, the sessions focus on physical and emotional self-care, identification of available resources, organizational skills, and assertive communication.

“After brain injury, people are in need of services such as rehabilitation, housing, income and vocational assistance,” says Hawley. “They get a lot of help in the beginning, but over time, it’s back in their own hands. This program was developed for individuals with brain injury, and the family members who might be helping advocate for them.”

In the first of the related pilot studies nearing completion, one group of individuals with brain injury participated in the in-person workshops, while the other control group received the program materials and workbook to review at home. Both groups have undergone pre-and post-program assessment. The program will next be offered to caregivers and support people.

The second pilot study is helping the research department develop the specific measurement tools to be used to assess self-efficacy for self-advocacy and self-advocacy behaviors in individuals with brain injury and their significant others. This study surveyed brain injury survivors and family members through the Brain Injury Alliance of Colorado and Rocky Mountain Human Services to gain further information regarding the proposed measurement scales.

According to Hawley, the lead principal investigator on each study, when completed these two pilot studies could lead to a full scale randomized controlled trial.

“After looking at the data, we’ll determine if this study could be expanded, and if the SAIL program could be made available at Craig through our outpatient department, or for spinal cord injury patients,” she says. “Self-advocacy skills are needed by everyone.”

The Research Department is currently recruiting family members or caregivers of brain injury survivors to participate in the SAIL study in the late summer. Contact Clare Morey at cmorey@craighospital.orgor call 303-789-8621 to learn more.

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