Western Oregon University

The Teaching Research Institute-Eugene

Family Advocacy Skills Training

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"By having this framework, we can go back and say well, did I have my goal set? Did I really know what I wanted? You know, did we get it prioritized? Did I have a place to go back and say things are not going well, where did I go wrong? So you have a kind of checklist, instead of looking at the whole universe of things."--Father of young woman with TBI

"And I pray it will work. Because I learned through these classes how to approach my grandson in a positive way, so that he didn't feel pressure. I couldn't have done it before." Family member of a survivor

Need

The Oregon needs assessment process identified advocacy training for families affected by brain injury as an important issue. Our project emphasized a personal advocacy (rather than general, political advocacy) approach.

Purpose

Our plan was to

• Develop an advocacy training handbook that families could use to become stronger advocates for their family member with a brain injury.
• Offer group training classes for families in various areas of the state
• Publish the handbook through the TBI TAC website so others could use it

Process

Using a formative-evaluation approach, we began by conducting focus groups and interviews to help us clearly understand the families' advocacy needs. These groups included people from our large state advisory board, people with TBI, their family members, and people working in the field of TBI. Urban and rural communities were represented, as well as different geographical areas of the state.We created a curriculum based on the focus group information, utilizing current materials and information in the field of TBI. Through a series of pilot training classes, we repeatedly refined and improved the curriculum and the training process. Each group rated the classes and handbook on importance, usefulness, and satisfaction.An example of a major change to the curriculum is the topic of goal setting. We encouraged people to set goals during the early versions of the class, but quickly realized that people frequently did not have the skills to set reasonable and attainable goals. We added a goal-setting process that was very well received:

After major revisions, we consulted a few of our advisory board members on the appropriateness of the changes. Although the final product differed significantly from our beginning handbook, reviewers agreed the changes were beneficial.For our final seven-week class, participants completed pre-post evaluations. Although there weren't enough subjects to establish statistical significance, we observed the following trends:

• Improved general satisfaction with visits to a care provider
• Lower levels of frustration with those visits
• Slightly higher satisfaction with care providers' treatment of survivor
• A marked reduction in caregiver anxiety
• Very high satisfaction with the classes, the handbook, the information, and the skills learned.

Lessons Learned

The careful formative-evaluation development process (using focus group, our advisory council, and repeated pilot testing) yielded a product that is helpful for family caregivers. If we had continued to use our first draft, the product would have been significantly less useful.Although we anticipated many people would want the advocacy training, we found it very difficult to fill group classes. This was true in all areas of the state, rural and urban. We believe some of the reasons for this are:

• Caregiving families have a high level of demands already; adding another weekly class was difficult.
• Many families had no respite care and could not leave their survivor alone.
• For the classes we tried during regular scheduled support groups, many times people needed support (not classes), and the drop-in nature of the groups was ill-suited for a sequential seven-week curriculum.
• Each family may need this type of training at different times, depending on many factors. Most communities in Oregon just don't have eight to ten families that are ready for a class at the same time.

On the positive side, participants who attended the entire training reported very positive results. Sometimes these breakthroughs were well beyond the scope of the training, yet showed the remarkable resourcefulness of caregiving families in their ability to take new skills and information a step beyond.

Recommendations

The FAST handbook is available free to anyone. Established support groups, schools, advocacy organizations, or interested people can distribute the handbook and bring people together for classes. Using a skilled facilitator is helpful, but any group, working through the chapters of the book together, could learn up and practice the skills to become stronger advocates for their person with a brain injury.