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

Advocacy Training in Persons Advocacy Training in Persons with TBI and their Familieswith TBI and their Families

Tom BergquistMayo Clinic

andJeff Nachbar

Minnesota Brain Injury Alliance ©2011 MFMER | slide-1

Behavioral ObjectivesBehavioral 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


Minnesota Brain Injury AllianceMinnesota Brain Injury Alliance

MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial, 2007-12

Grassroots Lobbying

• The act of asking people affected by brain injury to contact their own elected officials to take political action on important issues




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




Why Participate in Research• The dog wags the tail

• Helps do what we are already doing

• Provides insight on how to be more effective




History - Citizen Advocacy Programs

Pre 2005 – Realize Your Power

*05-07 Minnesota Advocacy Project

*08-11 Midwest Advocacy Project

2012 - Citizen Advocate Academy*Research Funding available from Mayo




Results of Participation• 7 years of funding to bring people

together for advocacy training

• Many opportunities to engage people in the political process




Results of Participation• 129 potential advocates exposed

to Brain Injury Alliance Policy work

• Top notch “Farm Team” for the Big Leagues




What can we learn?

How can we be more effective?

Let’s look at the findings!




Provide research evidence to support establishing effective advocacy training methods in other communities


Midwest Advocacy ProjectMidwest Advocacy Project


Collaboration with state Brain Injury Associations: MN, IA, WI

Randomize: curriculum versus self-directed


Study Design


One day/month for 4 consecutive months

Primary outcome measure is Advocacy Behavior Scale score of pre-post letter and video


Study Design


Hypotheses:Programmed advocacy training

Demonstrate better advocacy skills

Greater advocacy activity, behavior, perceived self-control

Increase media attention, policy, regulation, legislative activity




Provide research evidence to support establishing effective advocacy training methods in other communities





Variable 1 Curriculum(N=129)

Self-Directed(N=128)

P-Value

Age at intervention (years) 48.3 (21.2, 77.5) 4 47.2 (19.9, 86.4) 4 0.98 3

Sex 0.61 2

Male 51 (40%) 46 (36%)

Female 78(60%) 82 (64%)

State participant resides 1.00 2

Minnesota 47 (36%) 46 (36%)

Wisconsin 41 (32%) 41 (32%)

Iowa 41 (32%) 41 (32%)

Participant type 0.45 2

Patient 69 (53%) 75 (59%)

Family member 60 (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



Table 1. Comparison of those who completed Pre and Post Intervention vs. those who did not Non-Completer

(n=42) Completer (n=215)

p-value

Age 48 (20, 76) 48 (19, 86) 0.67 Sex 0.86

Male 15 (36%) 82 (38%) Female 27 (64%) 133 (62%)

Participant level 0.064 Patient 18 (43%) 126 (59%) Family Member 24 (57%) 89 (41%)

State of participant 0.45 Minnesota 19 (45%) 75 (35%) Wisconsin 12 (28%) 69 (32%) Iowa 11 (26%) 71 (33%)

Categorical variables are reported using number (percent), and continuous variables are reported using median (min, max). P-values were obtained using Fisher’s Exact test (categorical variables) or the Wilcoxon rank-sum test (continuous variables).


Table 2. Comparison of those who returned completed Pre & Post Intervention and retured postcards vs. those who completed Pre & Post and did not return postcards Did not return

Post Cards (n=85)

Returned Post Cards

(n=130)

p-value

Age 47 (21, 86) 49 (19, 73) 0.079 Sex 0.48

Male 35 (41%) 47 (36%) Female 50 (59%) 83 (64%)

Participant level 0.57 Patient 52 (61%) 74 (57%) Family Member 33 (39%) 56 (43%)

State of participant 0.15 Minnesota 24 (28%) 51 (39%) Wisconsin 27 (32%) 42 (32%) Iowa 34 (40%) 37 (28%)

Categorical variables are reported using number (percent), and continuous variables are reported using median (min, max). P-values were obtained using Fisher’s Exact test (categorical variables) or the Wilcoxon rank-sum test (continuous variables).

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 - ExcellentDomains 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


Results of Advocacy Behavior Scale Pre-intervention Ratings

Number and % of surveys within 3 points: – Letters before reconciliation 168/255 66%– Videos before reconciliation 173/255 68%

Agreement between the Reviewers (Intra-class correlation):– Letters: before reconciliation = 0.8 after reconciliation =0.9– Videos: before reconciliation = 0.8 after reconciliation =0.9

©2011 MFMER | slide-20MIDWEST ADVOCACY PROJECT: Randomized Practical Behavioral Trial, 2007-12

Results of Advocacy Behavior Scale Post-intervention Ratings

Number and % of surveys within 3 points– Letter before reconciliation 139/215 65%– Video before reconciliation 173/213 68%

Agreement between the Reviewers (Intra-class correlation)– Letter before reconciliation = 0.8 after reconciliation =0.9– Video before reconciliation = 0.8 after reconciliation =0.9


Comparison of Treatment Groups (patient and family members combined)

p-value (two sample t-test)– Letter 0.4447– Video 0.9357


Comparison of Treatment Groups (persons with brain injury only)



Comparison of Treatment Groups (family members only)



Persons with brain injury, Regardless of treatment assignment.

p-value (Paired t-test)– Letter 0.0713– Video 0.3673


Family members, Regardless of treatment assignment.

p-value (Paired t-test)– Letter <0.0001– Video 0.0309


Percentage of participants improving by 3 or more points on ABS from pre- to

post-

Letters

Survivors -curriculum

Survivors - self directed

Family - curriculum

Family - self directed

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

per

cen

tag

e

Videos

Survivors -curriculum Survivors - self

directed

Family - curriculum

Family - self directed

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

per

cen

tag

e


Follow-up Questions 130 of 215 who completed study responded


Follow-up Questions: Injury Prevention


Follow-up Questions: Media Involvement


Follow-up Questions: Contact with an elected official


Personally visited an elected official or public employee (p=0.044)


Follow-up Questions: Public Speaking


Summary of Findings 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).


Implications of FindingsImplications 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.


Documents

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