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A Study Looking at Long-Term Self-Advocacy After a Brain Injury

March 25, 2021

For people living with a brain injury (BI), it can be harder than before their injury to recognize what they need and have the confidence and tools to advocate for themselves. They likely have increased needs, plus difficulties with memory and communication, so it can be helpful to practice self-advocacy in navigating all aspects of daily life.

Lenny Hawley headshot at Craig Hospital

Craig Hospital’s Self-Advocacy for Independent Life (SAIL) program was founded by Lenny Hawley, LCSW, a BI counselor and research clinician at Craig, to teach people living with brain injuries how to put self-advocacy into practice and build confidence through connecting with peers. People enrolled in the SAIL program generally participate for six to eight weeks, meeting weekly with a group of about six people and a Craig Hospital brain injury counselor. Participants leave the program better prepared to recognize their needs and wishes, evaluate them, and then make informed decisions on how to address them.

While Lenny could see that the program was having an impact on its participants, she wanted to take a closer look at the efficacy of the program and better understand its long-term implications. To accomplish this, Lenny and a team of researchers embarked on a five-year study funded by a Traumatic Brain Injury Model Systems grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) to evaluate the program. Other members of the research team included Clare Morey, Mitch Sevigny, Jessica Ketchum, Grahame Simpson, and Cynthia Harrison-Felix.

What did they learn? People living with brain injuries, even many years after their injury, can improve their self-confidence and their belief that they can be advocates for themselves; there is always an opportunity for personal growth. But, for that growth to be continued, the team found that there need to be long-term support systems in place so people can continue to practice their self-advocacy skills. Just like with any other skill, whether it’s playing a musical instrument or learning a new language, self-advocacy is a lifelong journey that needs to be practiced regularly.

SAIL research study at Craig Hospital

The study took place in fives waves in five different locations in Colorado to include people from a variety of communities. Each group participated in three 3-hour group sessions focused on self-assessment and self-awareness. This was followed by a two-week break; then the groups gathered again for a fourth session, and the fifth and final step was a check-in phone call with Lenny.

Four primary areas were addressed within the self-assessment and self-awareness focus:

  • Wellness: It can be difficult to advocate for yourself if you don’t have good emotional, physical, social, spiritual and cognitive health.
  • Knowledge: To know what you need, it’s important to be knowledgeable about brain injury and learn about resources available in your area.
  • Organization: Thinking ahead and being prepared with your concerns or questions helps you be a better advocate for yourself.
  • Communication: Being able to communicate your needs clearly and confidently is important for people understanding you and being able to help you.

In addition to these important topics of conversation, an essential part of the sessions is the group interaction. As with other kinds of affinity or support groups, getting together with other people living with brain injuries helped participants notice the universality of their experience and created social support. The group dynamic gave people the feeling of “I can do this,”and it was empowering to help others feel better about themselves.

Measuring outcomes in the study involved actually developing some new measurement tools, namely two scales for participants to use to rate their experience. The team developed the Self-Advocacy Scale (SAS), a measure of a person’s belief that they are able to accomplish a specific task, and the Personal Advocacy Activity Scale (PAAS), a measure of whether someone is actually doing the tasks they believe they can do (i.e., have you actually made an appointment with your therapist?). These two scales developed by the Craig team were used in combination with a general scale of self-efficacy (i.e., the feeling of “I can handle my life”) and one of life satisfaction.

The team found that the treatment group showed significant changes over the non-treatment control group. However, they were not able to maintain this significant difference over time after treatment ended. What does that mean for their conclusions? It means that people can improve in their confidence and belief that they can advocate for themselves, even if they don’t accomplish some of the tasks they set out to do, and that continued support may be necessary to maintain that belief in one’s ability to advocate for oneself.

Now that it has been shown that the SAIL program has a positive impact on people living with brain injuries, Lenny is hopeful that it will become a more widely used program. Already, Colorado’s MINDSOURCE Brain Injury Network will be rolling out the program across the state, and Lenny is part of a task force bringing the program in a semester-length format to Arapahoe Community College.

Questions about this study? You can reach out to Lenny Hawley at LHawley@CraigHospital.org.

This research study was completed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant no. 90DPT80007-01-00). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS).