Advocacy Training in Persons with TBI and their Families Tom Bergquist Mayo Clinic and Jeff Nachbar Minnesota Brain Injury Alliance ©2011 MFMER | slide-1

Behavioral Objectives Be able to describe the needs for advocacy and advocacy training. Be able to understand the challenges of doing research on advocacy and how the Midwest Advocacy Study (MAP) attempted to address these challenges. Be able to describe several of the findings of the Map study. ©2011 MFMER | slide-2

Public Policy Department Political Advocacy/Policy Change 1.Direct Lobbying 2.Grassroots Lobbying ©2011 MFMER | slide-3 Minnesota Brain Injury Alliance MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Grassroots Lobbying The act of asking people affected by brain injury to contact their own elected officials to take political action on important issues ©2011 MFMER | slide-4 Minnesota Brain Injury Alliance MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Effective Grassroots Lobbying Provide training and information on the issues and the political process Provide opportunities for people to engage politically and use new skills ©2011 MFMER | slide-5 Minnesota Brain Injury Alliance MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Why Participate in Research The dog wags the tail Helps do what we are already doing Provides insight on how to be more effective ©2011 MFMER | slide-6 Minnesota Brain Injury Alliance MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

History - Citizen Advocacy Programs Pre 2005 – Realize Your Power *05-07 Minnesota Advocacy Project *08-11 Midwest Advocacy Project Citizen Advocate Academy *Research Funding available from Mayo ©2011 MFMER | slide-7 Minnesota Brain Injury Alliance MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Results of Participation 7 years of funding to bring people together for advocacy training Many opportunities to engage people in the political process ©2011 MFMER | slide-8 Minnesota Brain Injury Alliance MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Results of Participation 129 potential advocates exposed to Brain Injury Alliance Policy work Top notch “Farm Team” for the Big Leagues ©2011 MFMER | slide-9 Minnesota Brain Injury Alliance MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

What can we learn? How can we be more effective? Let’s look at the findings! ©2011 MFMER | slide-10 Minnesota Brain Injury Alliance MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Provide research evidence to support establishing effective advocacy training methods in other communities ©2011 MFMER | slide-11 Midwest Advocacy Project MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

 Collaboration with state Brain Injury Associations: MN, IA, WI  Randomize: curriculum versus self- directed ©2011 MFMER | slide-12 Study Design MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

 One day/month for 4 consecutive months  Primary outcome measure is Advocacy Behavior Scale score of pre-post letter and video ©2011 MFMER | slide-13 Study Design MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Hypotheses: Programmed advocacy training  Demonstrate better advocacy skills  Greater advocacy activity, behavior, perceived self- control  Increase media attention, policy, regulation, legislative activity ©2011 MFMER | slide-14 Midwest Advocacy Project MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Provide research evidence to support establishing effective advocacy training methods in other communities ©2011 MFMER | slide-15 Midwest Advocacy Project MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

©2011 MFMER | slide-16 Variable 1 Curriculum (N=129) Self-Directed (N=128) P-Value Age at intervention (years)48.3 (21.2, 77.5) (19.9, 86.4) Sex Male51 (40%)46 (36%) Female78(60%)82 (64%) State participant resides Minnesota47 (36%)46 (36%) Wisconsin41 (32%) Iowa41 (32%) Participant type Patient69 (53%)75 (59%) Family member60 (47%)53 (41%) 1 The sample median (minimum, maximum) is given for numerical variables, n (%) for categorical variables. 2 P-values are based on Fisher’s exact test 3 P-values are based on Wilcoxon Rank Sum test 4 Information was unavailable for age at intervention for n=4 Curriculum participants and n=2 Self-directed participants MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

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Advocacy Behavior Scale (ABS) Rate each of the 5 dimensions below on the following 5 point scale: 0 - Absent/poor 1 - Fair 2- Good 3 - Very Good 4 - Excellent Domains to be rated: 1.Clarity (Communication is easy to understand and relevant to the primary message) 2.Cogency (Facts and logic are used to support opinion) 3.Passion (Personal stories, anecdotes and feelings are offered to support opinion) 4.Appropriateness (Feelings and opinions are expressed without being offensive and without personal attacks) 5.Potential Effectiveness (Likelihood that the presentation would make an impression and be remembered by the person receiving the communication) Total Score of 0 to 20 ©2011 MFMER | slide-19

Results of Advocacy Behavior Scale Pre- intervention Ratings Number and % of surveys within 3 points: – Letters before reconciliation 168/255 66% – Videos before reconciliation173/255 68% Agreement between the Reviewers (Intra-class correlation): – Letters: before reconciliation = 0.8 after reconciliation =0.9 – Videos: before reconciliation = 0.8after reconciliation =0.9 ©2011 MFMER | slide-20 MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Results of Advocacy Behavior Scale Post- intervention Ratings Number and % of surveys within 3 points – Letter before reconciliation 139/215 65% – Video before reconciliation173/213 68% Agreement between the Reviewers (Intra-class correlation) – Letter before reconciliation = 0.8 after reconciliation =0.9 – Video before reconciliation = 0.8after reconciliation =0.9 ©2011 MFMER | slide-21 MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Comparison of Treatment Groups (patient and family members combined) p-value (two sample t-test) – Letter – Video ©2011 MFMER | slide-22 MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Comparison of Treatment Groups (persons with brain injury only) p-value (two sample t-test) – Letter – Video ©2011 MFMER | slide-23 MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Comparison of Treatment Groups (family members only) p-value (two sample t-test) – Letter – Video ©2011 MFMER | slide-24 MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Persons with brain injury, Regardless of treatment assignment. p-value (Paired t-test) – Letter – Video ©2011 MFMER | slide-25 MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Family members, Regardless of treatment assignment. p-value (Paired t-test) – Letter < – Video ©2011 MFMER | slide-26 MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Percentage of participants improving by 3 or more points on ABS from pre- to post- ©2011 MFMER | slide-27 MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial,

Follow-up Questions 130 of 215 who completed study responded ©2011 MFMER | slide-28

Follow-up Questions: Injury Prevention ©2011 MFMER | slide-29

Follow-up Questions: Media Involvement ©2011 MFMER | slide-30

Follow-up Questions: Contact with an elected official ©2011 MFMER | slide-31

Personally visited an elected official or public employee (p=0.044) ©2011 MFMER | slide-32

Follow-up Questions: Public Speaking ©2011 MFMER | slide-33

Summary of Findings Study provided a robust measure of advocacy behavior. No difference between treatment conditions (curriculum versus self-directed) in advocacy behavior. Clear improvement in ratings of advocacy behavior for family members regardless of treatment condition. High levels of some advocacy activities on follow-up assessment (e.g. contacting public officials). ©2011 MFMER | slide-34

Implications of Findings Which specific curriculum is taught in advocacy training may not be important. Having persons with an interest in advocacy coming together for purpose improving advocacy skills can result in improved advocacy skills. It may help to make adjustments and use accommodations during advocacy training based upon an individuals level of cognitive functioning. ©2011 MFMER | slide-35