Inclusion of Minorities in Traumatic Brain Injury Rehabilitation and Outcome Research: Special issues. Presenters: Dr. Angelle M. Sander, Dr. Margaret Struchen, Dr. Allison Clark and Dr. Gina Evans. >> JOANN: Good afternoon everyone. And thank you for joining the webcast today on the Inclusion of Minorities in Traumatic Brain Injury Rehabilitation and Outcomes Research: Special issues. My name is Joann Starks, and I'm with the National Center for the Dissemination of Disability Research or NCDDR based at the Southwest Educational Development Laboratory in Austin, Texas. I'll be moderating today's webcast and getting your questions to our presenters. Cohosting today's webcast is Frank Martin, who is also with the NCDDR. Before we move on to the introduction of today's presenters, I want to be sure to thank our partners at ILRU in Houston for helping with the technical side of the webcast. There are some materials accompanying today's webcast that can be found on both the ILRU and the NCDDR web pages. In addition to a description of the webcast and information about each of the presenters, there is a PowerPoint file for the presentation as well as a text file of the same information in Word format. The PowerPoint file will be displayed during the webcast so you do not need your own copy. Please remember that this material is copyrighted and cannot be used without the written permission of our presenters. Contact information is provided on the last page of the presentation materials. You can submit questions at any time during the webcast and the presenters will decide whether to answer them at the end where we have set aside a question and answer period or during the webcast if clarification is needed. To ask a question, you can click the submit button at the bottom of your Windows Media Player or RealPlayer screen or you can send an E-mail to webcast@ncddr.org. If you have any technical difficulty during the webcast, please call ILRU at (713)520-0232, dial 0 for the operator to ask for assistance. This number is both voice and TTY capable. I also want to mention that we would very much appreciate your feedback by filling out a brief evaluation form at the end of today's webcast. You can click on the downloads tab at the bottom, far right, of your Windows Media Player or RealPlayer screen, and you'll find a direct link to the evaluation form. The link to this form is also found on the ILRU and NCDDR web pages related to the webcast. I'll remind you about this again at the end of today's presentation. Now I'd like to turn it over to Frank Martin who will introduce today's guest presenters. >> FRANK: Thank you, Joann. The NCDDR is pleased to bring you today's webcast on the topic of traumatic brain injury research and diverse communities. We are privileged to have Drs. Angelle Sander, Margaret Struchen, Allison Clark and Gina Evans as our presenters to discuss today's topic. Drs. Sander and Struchen are both assistant professors in the Department of Physical Medicine and Rehabilitation at Baylor College of Medicine and codirectors of the Brain Injury Research Center at Memorial Hermann/TIRR in Houston, Texas. They also codirect the NIDRR-funded Rehabilitation Research and Training Center, RRTC, on community integration of persons with TBI. Allison Clark and Gina Evans are both postdoctoral fellows. Dr. Clark is sponsored by the NIDRR-funded RRTC on community integration of persons with TBI and Dr. Evans is sponsored by a NIDRR-funded advanced rehabilitation research training grant. Now I would like to invite Dr. Sander to begin today's presentation. >> ANGELLE: Good afternoon, everyone. We're glad to be able to present today some information that we have on inclusion of minorities in traumatic brain injury research. The information we're going to present comes from about ten years of experience in conducting clinical trials, research as well as survey research with persons from diverse backgrounds, including diverse racial and ethnic backgrounds, socioeconomic backgrounds and educational backgrounds. Currently, we are funded as a Rehabilitation and Training Center on community integration for persons with traumatic brain injury. And that funding began in November of 2003 and goes through the end of October 2008. Most of what we will present today in terms of data comes from this particular project, but we were also funded in a previous five-year cycle as a Rehabilitation and Training Center on interventions for persons with traumatic brain injury. We're also going to be presenting a little bit of information on that as well. Our current RRTC serves as a center for excellence for research and training and community integration of persons with TBI. And it consists of six research projects and eight training or demonstration projects. Dr. Struchen and I are the coprincipal investigators on this RRTC. The director of training is Karen Hart. We have a medical coinvestigator, Sunil Kothari. And our research assistants who are in there on a daily basis and who have helped us prepare this presentation in terms of the different techniques that they've used to make sure that we are recruiting persons of all backgrounds in our research. Monique Mills and Diana Kurtz are the two research assistants who work with us and the postdoctoral fellows who have been funded are Lynne Davis and Allison Clark and Gina Evans who you will hear speak today. I want to briefly describe the mission of our Rehabilitation and Research and Training Center is. >> JOANN: Should we be moving ahead through the PowerPoint pictures? We need to tell Rob to move them each time we need to move one. >> ANGELLE: So we should be on the slide that says mission of the Rehabilitation Research and Training Center on community integration. >> JOANN: I think that's slide 5, Rob. >> ANGELLE: Yes, it is. >> JOANN: Try and stick with the numbers. It will make it easier to get through. >> ANGELLE: The mission of the Rehabilitation and Training Center is that all those affected with TBI including traditionally underserved populations have access to all the information that they need in order to maximize their participation in the community. And that treating professionals have the necessary information to meet the needs of persons with TBI. So we know there is a lot of research that's been done in traumatic brain injury with respect to community integration but in most of the studies there has been a low percentage of persons from diverse backgrounds included. And so when we designed the studies on this grant, we actually designed them to be conducted with those underserved populations. Case slide 6, a second mission of our center is that all areas of community integration, including traditionally underemphasized areas be addressed. And so the research on traumatic brain injury is focused primarily on outcomes such as employment and independent living, and these are very outcomes, but just as important to persons with injury and their family members are areas like friendship, intimacy and creative expression. And these are areas which have been under emphasized in the research and which we have chosen to focus on largely because our involvement with consumers and the conduct of focus groups at our center has indicated that these are areas that are rated as very important by consumers. Thirdly, our mission includes that attitudinal barriers to community integration of persons with traumatic brain injury be reduced so we're interested in educating the general community on policymakers and anyone else who has an impact on the community integration of persons with TBI in order to change attitudes that may serve as an obstacle to community integration. Next slide. Final aspect of our mission is that new types of partnerships such as those of the larger disability community be established in order to empower persons with traumatic brain injury to have a voice in creating community services and networks that can maximize their community participation. So some examples of these types of partnerships are partnerships with brain injury associations, local and national, as well as partnerships with the general disability community that can help persons with traumatic brain injury to be able to learn to advocate for themselves and to obtain better services. So that's a brief overview of the mission of our center. And I'm going to turn it over to Dr. Struchen who is going to talk a little bit about the specific projects that we have that focus on underserved populations. >> MARGARET: Good afternoon. So Dr. Sander covered the four-fold mission that our center is attempting to address and in particular what I'm going to be talking about today because of the nature of our presentation is focused on our first aspect of our mission, which is really ensuring that all persons -- particularly those from underserved populations -- receive information services. The particular underserved populations that we are attempting to address in this particular study focus on those from lower socioeconomic backgrounds. >> JOANN: Can we have slide 8, please. >> MARGARET: Sorry, slide 8. Those from ethnic and racial minority groups, those from rural populations and in one particular study in which we're looking at intimacy issues we're also looking at those under represented types of relationships from varying backgrounds with regard to sexual orientation. So on our particular grant we have three clinical trials and three survey studies which really are focused particularly on addressing these underserved populations. So the slide 9, please. There are three clinical trials that we are undertaking, and I guess just to give you some background information, the way in which we are recruiting persons to participate in these studies and how we are attempting to sample these underrepresented populations is through our collaborations with various centers, in particular we have done a lot of research with Harris County Hospital District here in the Houston area and that interaction and collaboration with the county hospital district has actually preceded the ten years of funding that Dr. Sander discussed prior to our involvement in terms of rehabilitation projects with the county system, some of us have been involved in research in collaboration with the Department of Neurosurgery at Baylor College of Medicine and so participated in outcome studies that have explored the impact of physiological variables on outcomes for persons with traumatic brain injury. And so some of our experiences in recruiting persons with traumatic brain injury for research studies actually come from that experience working in the county hospitals. Just to give you a brief introduction to the county system, the hospital that we recruit at primarily is Ben Taub General Hospital. That is one of two level 1 trauma centers here in the Houston area. It's received many critically injured patients in Houston and Harris County since 1963. It has 550 inpatient beds. It's come complete modern care facilities again with its involvement with research studies, looking at persons with traumatic brain injury it's a state of the art monitoring equipment and so forth. And because it is a county hospital system, we do have very diverse populations that are served through that center. So with regard to racial/ethnic background, it's approximately a 30 percent Caucasians that are served there, about 35 percent -- 30 to 35 percent African American, about 40 percent Hispanic/Latino and the remaining being either Asian or persons of other backgrounds. So we have a pretty broad diverse population with regard to ethnicity. Again, because it is a county hospital system, there is an over representation perhaps of persons from lower socioeconomic backgrounds because those without resources are more likely to be served within the county system. So we have used that relationship with Ben Taub General Hospital to really expand our abilities to recruit persons from such diverse backgrounds. So many of our studies that are conducted on the current R&T Center are actually taking place within that county hospital system. And two of those projects include a clinical trial we're conducting that is looking at a brief intervention for reducing substance abuse after traumatic brain injury or substance abuse after traumatic brain injury and the study is not only conducted at the Harris County Hospital District here in Houston, but also done in collaboration with Ohio State University and Grant Hospital which is a similar county hospital system within the Columbus, Ohio area. Another clinical trial that we're conducting is one looking at use of social peer mentoring to try to enhance social outcomes for persons with traumatic brain injury and that particular project recruits not only from the county hospital, but also from The Institute for Rehabilitation and Research, our local rehabilitation facility. Again, it's our attempt to try to expand coverage and to include people from diverse backgrounds within this clinical trial. Additionally, we have two survey studies that are taking place within the county hospital system here in Houston, one is specifically targeted at looking at ethnic diversity issues and it is a study in which we're trying to -- >> JOANN: That would be slide 10, please. >> MARGARET: That would be a study in which we're trying to look at diversity with regard to acceptance of disability, with regard to community integration needs, barriers and supports, the perceptions that various persons from various ethnic backgrounds may have with regard to those issues. The other study that is being conducted in the county system is one that's looking at the contribution of various factors to decrease social integration following traumatic brain injury. Both of these studies again are being conducted in the county system and do involve tracking a person over a period of time even though it's a single assessment, we are recruiting people initially and having to track them six months post-injury. So some of the experiences we have with regard to retaining and recruiting persons for the studies are very similar to that that we experience with our clinical trials. Finally, with regard to addressing the rural populations, we have a study in collaboration with West Texas A&M University in Canyon, Texas and Northwest Texas Hospital in Amarillo, Texas in which we are attempting to train family members as paraprofessionals using distance learning. So we have a distance learning center at West Texas A&M in which families are able to participate in -- with interaction from our staff here in Houston to try to teach them some techniques to assist their family members with traumatic brain injury to maximize their outcomes in the community. And then the other under represented population that I mentioned earlier is in collaboration with the University of Illinois Chicago which is a study looking at intimacy issues after traumatic brain injury and in terms of trying to address underrepresented populations, we have made an attempt -- this is a descriptive study with where we are trying to recruit participants -- couples from various kind of relationships. So we have married couples, single couples, cohabiting couples, both heterosexual and homosexual couples. So our attempt there is to try to address various individuals -- individuals with various backgrounds with regard to sexual orientation. This is a brief summary of the products that we are undertaking here. Virtually all the projects that I have been mentioned have been attempting to address underserved populations. And so what I'd like to do now is turn this over to Dr. Gina Evans who will talk in general about issues with regard to cultural diversity. >> JOANN: That would be slide 11. Dr. Evans, I wanted to ask you if you could try as much as possible to slow your speech just a little for the benefit of our captioner. >> GINA: I only heard the last part. >> JOANN: Slow your speech down a little bit to make it easier for our captioner. I know we have a lot of information to cover, but I think we're going to be okay with time because we can run a little bit late if we need to. No one needs to feel rushed. And we're starting off with you on slide 11. >> GINA: Yes. >> JOANN: Thank you. >> GINA: Okay, good afternoon. I'll be discussing the definition and applicability of culture, cultural competency and cultural competency in research study. Slide 12, why should we study diversity? According to the 2000 U.S. census, approximately one-third of U.S. citizens are nonEuropean Americans. It is projected by 2050 that over half the total population will be nonHispanic white Americans with 24 percent being Hispanic Americans, 14 percent being African American, and 8 percent being Asian. Minorities have disproportionately higher rates of disability in comparison to whites with African Americans and Hispanics being over represented in all disability categories especially in terms of talk. African American and Hispanics have higher rates of traumatic brain injury as a result of differences in preinjury risk factors, demographic characteristics and lifestyle choices. Slide 13, why should we do minority focused research? Values, beliefs and behaviors are influenced by our heritage regardless of what heritage you come from. It is essential to developing better results for people with disabilities and without disabilities. The findings were not applicable to minorities thus further contributing to the disparity in health care and treatment experienced by ethnic minorities. Slide 14, what is cultural competency? This definition or this term has been studied for over a decade among mental health researchers and has been integrated in a variety of treatments and curriculum. Throughout the mental health literature, there is cultural competencies and culture. People have erroneously limited the definition of culture to race and ethnicity when in actuality it is more broadened to sex, gender, sexual orientation and even disability. One of the most commonly cited definitions includes a set of congruent behaviors, attitudes and policies that come together in a system, agency or amongst professionals and enables that system, agency or other professionals to work effectively in cross cultural situations. Slide 15, much of the cultural competency literature focuses on possessing cultural knowledge and having an awareness and understanding of different cultural backgrounds. One is what is important to understand the background of your participants, simply having cultural knowledge and awareness is not enough to act culturally competent. It also encompasses having an ongoing commitment to the institution or your settings appropriate practices of policies for diverse populations. Slide 16, the values and beliefs of ethnic minority study participants may differ considerably from that of the researchers even if they are two people who belong to the same ethnic background. Without knowing how to effectively cope with those differences, researchers or participants may unintentionally act in a discriminatory manner towards each other. Researchers should attempt to integrate cultural competency into training, research design and recruitment and retention efforts to decrease the instances of unethical and discriminatory practices. Now, having cultural competency does not negate anyone from acting in an unsavory manner and it is not guaranteed that such cultural differences will not occur. However, one should be more aware of when instances do occur and be provided with more tools to rectify the potential problems. Slide 17, researchers and staff members should increase the level of cultural awareness and knowledge and skills by attending workshops and training sessions. Everyone should attend such sessions regardless of their ethnicity or cultural background. Because of the variability within cultures, one would still benefit by attending such workshops to understand how to get along with all individuals of different backgrounds and similar backgrounds. The information obtained from the training course should be infused into research practices instead of only reviewed yearly or during the next training session. Slide 18, the trainings can be a separate occurrence or a regular occurring activity. Ideally, training will be sought as a part of C. E. U. units or for licensure and employment evaluation. Training can occur through informal methods such as discussions with others of different ethnic groups, scholarly readings and webcasts such as this one. These sessions are offered through nationally recognized organizations, conferences and through consulting agencies. Slide 19, many researchers design studies based on their primary hypothesis and their institutional focus, for example, we focus primarily on brain injury, other model systems focus primarily on spinal cord injury. Rarely are participants demographic and cultural factors considered during the planning and design stages. Not taking such things into consideration can cause researchers to inadvertently exclude minority research participants. For example, designing a study to occur in a private training facility located in a suburban area will exclude those who are poor and may have transportation issues. Slide 20, studies should be designed in a culturally inclusive, not exclusive manner. For instance, researchers that collect data from public access treatments, use culturally appropriate intervention materials, choose assessments that include minorities and not only the development but the validation process. Slide 21, hire multicultural and bilingual research staff, use translators and interpreters when necessary and this is essential for participants whose primary language is not English. They should use community-based recruitment approaches such as speaking with churches and community leaders. This will help reach participants who may benefit from the intervention but cannot afford the treatment that will be offered in another setting. Additionally, researchers should also provide study incentives that may be more beneficial to underserved minorities. For instance, providing grocery gift cards and additional health screening services. Rethinking compensation is very important and has been found in some studies that participants volunteer strictly on the basis of the additional medical help they receive instead of the financial compensation. Slide 22, additionally, researchers create a welcoming and culturally friendly environment. This can be done by having pictures of culturally diverse people in their settings and removing potentially biased objects and information, playing culturally diverse music or having pictures that represent different cultures. We should treat all participants with respect and compassion, even when cultural differences arise in researchers and staff members find themselves being frustrated with the process. Finally, incorporating family and friends into the recruitment process is also a necessity. The movement toward integrating cultural competency in clinical care has gained national attention. Since research informs practice, it is also time for cultural competency to be infused into rehabilitation research practices. This infusion can lead to a decrease in disability rates and an increase in health status among ethnic minority populations. Thank you and I'll now turn it over to Dr. Allison Clark. >> JOANN: That would take us to slide 24. >> ALLISON: Okay, and we should be on slide 24. I'm going to be speaking about our experiences with informed consent, recruitment and retention of minorities and TBI rehabilitation research. Slide 25, as Dr. Struchen noted, we recruit participants or our research projects primarily from the county hospital which is a level 1 trauma center with an ethnically diverse patient population and this county population also tends to be of lower socioeconomic status. We have an ethnically diverse research staff, including African American and Hispanic research assistants that contact patients and family members about our projects and obtain informed consent. Both of our actual research assistants were bilingual which helps in recruiting Hispanic speaking persons. We have found that having this initial face to face contact in the hospital increases the likelihood someone will participate. As far as the timing, we wait until life threatening issues are stabilized before approaching patients or family members. Once they are stabilized, we see them and briefly assess their status. We will talk to them about our projects, and if they are still confused or unable to communicate, we monitor their recovery and also try to contact a family member to discuss the projects. Oftentimes patients are not formally consented during hospitalization because they are confused or in too much pain or too tired. However, patients or family members most always agree to be contacted after discharge. Informed consent obtained after discharge during a home visit that is occurring during the daytime or evening or weekends. We also meet patients before, or after outpatient clinical appointments. In any case, this necessitates a lot of flexibility on the part of the research staff with respect to timing and location of the informed consent process. >> JOANN: This is Joann. Can I ask you to try and slow it down again just a little bit more. >> ALLISON: I'm sorry. >> JOANN: I know you have a lot to share and we're eager to hear it. >> ALLISON: I'll talk slower. We have found that some of the most important things with recruiting in this diverse county hospital population is the initial face to face contact during the hospitalization, flexibility and having ethnically diverse bilingual research staff. Slide 26, when approaching patients from diverse ethnic and background for research projects there are several factors that research staff should be aware of that can affect willingness to consent. The first is possible suspiciousness about the research project. The patient may be concerned that they are being targeted or being taken advantage of in some way that is not readily apparent. So it can be helpful to be able to share with patients why they were contacted and how their contact information was obtained. For example, we let them know that we're contacting everyone who was treated at the county hospital for a brain injury to reassure them this they personally are not being singled out for any reason other than the brain injury. And it can also be helpful to emphasize the volunteer aspect of the projects and that declining to participate does not impact their care in any way. Another issue we have encountered that can affect willingness to consent in this population is residency status. Some of the patients we contact are not legal residents of the United States and as a result they have concerns about getting involved in a project where they provide personal and contact information. Some patients also have concerns about how their information could potentially affect ongoing legal problems which can also impact their willingness to participate. So a careful and thorough discussion of confidentiality including the limits can help address these issues. Slide 27, we have found that some of the language that is part of the standardized consent form can be a little confusing for our participants which likely reflects educational background of the county hospital population. While the language in many consent forms is at 8th grade level, we have still observed some confusion with the language and terminology used at this level. Persons may not be familiar with the concept of randomization in a research study, so it is helpful to explain how this flipping of the coin helps researchers evaluate whether or not a treatment works. Another aspect of our standardized consent form that is confusing for patients is a section where it describes how they may be dropped from the study for various reasons, including having a bad reaction to study medications. And given that medications were never mentioned prior to that section of the consent form, this can be really confusing and may contribute to suspiciousness regarding the project. Therefore, we take extra care to explain that these are standardized sections used throughout Baylor College of Medicine and that is used as an example in use and that no study medications are being used in the project. Another issue we have encountered when contacting patients about participating in our projects on traumatic brain injury is their perception that they did not have a traumatic brain injury. For example, we have heard people tell us they didn't have a traumatic brain injury, but that they did have brain surgery or that they just had a blood clot on their brain. So we are very aware that people may not be familiar with the term traumatic brain injury and may not identify with that term so we have to provide further information about what characterizes a traumatic brain injury including real world examples. Now it's not unusual for patients to have poor awareness of deficits following traumatic brain injury and so we often hear from patients that they are doing just fine and because they perceive they are doing fine, they may not see a reason to participate. Finally, another factor that can affect willingness to participate is financial stress, that forces patients to return to work very soon after injury and these persons may of significant life stressors and so may not have the time or energy to participate in a research project. Slide 28, now I want to talk about factors that facilitate consent. One of the most important factors that facilitates consent and participation in our research projects is the involvement of the family. It's not unusual for patients, especially black and Hispanic patients to refer research staff to a family member to discuss the project further. And for those patients who are still confused or unable to communicate, our initial contact with is with a family member who may refer us to another family member for further discussion. Involvement in support of the family during the initial contact phase often increases participation and in this way the patient's participation in the research project reflects more of a family decision than an individual decision. As I mentioned earlier, some of the language and style of the consent form can be confusing. So it vital to provide an opportunity for patients to ask questions after going over each individual section of the consent form rather than waiting until the end. In our experience, it has also been helpful to emphasize how information obtained from the project helps others in the future. Or example how information can be used to develop treatments that can help others with brain injury and we've also found that it's helpful to highlight how some people find it helpful to talk about their injury and how it has affected them. So providing a framework of the research project as a collaborative process between researcher and participant can minimize the sense that the patient is just another number or just some sort of guinea pig. Slide 29, now, as I noted in a previous slide, our research staff is extremely flexible. And the flexibility is really important for enrollment. Our research staff sees patients during days, evening and weekends at a time that is convenient for the patient. And the majority of these visits are done within their home environment. And providing the option of home visits minimizes the impact that transportation or child care or financial issues can have on participation. Also our two full time research assistants are bilingual and a patient's ability to communicate directly in his or her language with the staff can increase their comfort and build rapport. Having bilingual staff eliminates translator issues so there is no need to wait for a translator to come and translate or to schedule sessions according to a translator availability and is also eliminates concern about the accuracy of the translation. Slide 30, during the informed consent process, we encounter a lot of questions from both patients and family members about the project as well as about brain injury in general and recovery from brain injury. Therefore, it's also important to allot additional time during the contact and consenting phase to answer questions, to provide education, to repeat important information and to clarify any confusion, and it's not unusual for us to spend 30 to 45 minutes consenting individual participants. One of our projects is a randomized control trial of brief educational intervention for substance abuse after TBI and as part of this project we ask several detailed questions about drug and alcohol use which can be a sensitive issue for some persons. Some patients have expressed concern about how this information will be use and will it get back to their employer or a family member. So we obtain a certificate of coverage which states that information about their substance use cannot be used in any legal proceedings. And as additional protection can help reassure patients of the coverage of their report of drug and alcohol use. So a really frank discussion of coverage including the limits of coverage, and discussion about their concerns about potential breaches in confidentiality helps improve participants comfort. Slide 31, one factor that can affect consent in Hispanic persons is the role of respect which is a very important aspect of Hispanic culture. They may be reluctant or hesitant to say no to a professional's request because they don't want to be perceived as disrespectful. Therefore, it's really important for research staff to be aware of situations where Hispanics may be in a position to reject a professional's request. It can be helpful to emphasize kind of the voluntary aspect of the projects and also the collaborative nature of the projects it may minimize a perceived pressure to participate. Slide 33, another issue that we've experienced that can impact the consent process with Hispanic persons is the actual payment for participation. Many Hispanic participants that we've worked with have expressed to the research staff actual discomfort with accepting payment for participation. In fact, many Hispanic participants have expressed surprise that there are no costs for participation and surprised there won't be any bill coming in the mail. Persons who are not legal residents may not be eligible for financial assistance programs, so they are forced to return to work very early after injury which can also affect their ability to participate. And finally, as I mentioned earlier, the role of the family in decision-making is really important so discussing the project with a key family member, a key contact person and having their support can really facilitate consent with both Hispanic and black patients. Slide 33, rapport building is an important part of the consent process, and will contribute to retention of participants over time. Prior to our initial contact with the patient, we get as much information about their injury as possible. And this information will help kind of contribute to this rapport building and we obtain information about the mechanism of injury and the severity of injury as well as the presence of other injuries such as a spinal cord injury, amputation or loss of vision. We want to know if there were any fatalities that occurred as a result of the accident, what was the duration of consciousness or just a couple other factors we want to know. And this background information provides a foundation for that initial contact and also personalizes that initial contact for both patient and family members and it can also help research staff anticipate potential questions and issues that may arise. For example f a person has sustained a visual loss as a result of their brain injury, we don't leave them written material. And again, making that initial contact in the hospital at an appropriate time following the stabilization of their medical issues and then continuing to check in with the patient and family during their hospitalization and showing genuine interest and concern for their well-being can contribute to a positive relationship between the participants, family members and research staff. Slide 34, discussion of the research projects also provides opportunities for patients and family members to tell their stories and to share their experiences, allowing time for patients to tell their stories and to ask questions can also help build rapport and contribute to a collaborative mat months fear in almost every case that we've had, this is realty first time any health care profess always has sat down and discussed with the patient their traumatic brain injury in detail. In many cases, patients and families have received very little education about traumatic brain injury so questions about their injuries, symptoms and recovery are really common. And providing education about brain injury and typical recovery course as well as information about resources and services provides much needed information and also helps establish a positive relationship with patients of or family members. In fact, it is not unusual in our experience for research staff to also function as a contact person who can direct patients and families towards resources and services. Slide 35, for example, research staff provide assistance with important phone numbers like numbers for doctors' offices and the DARS program, which is department of assistive and rehabilitative services for persons with disabilities here in Texas. As well as frequently used forms like the Harris County gold card application which assists low income residents of Harris County with medical expenses. Research staff have also provided translation at bedside for brief interactions if they're available and unless it's a translation for a consent for a medical procedure. In those cases they will refer to a hospital staff translator. And finally we are really fortunate to have good relationship was neurosurgery and physical medicine and rehabilitation physicians which can help facilitate needed appointments for our research participants. So all these extra things that research staff do all help establish a positive relationship with patients and contribute to retention over time and provide patients and their families with much needed information. Slide 36, retention of study participants over time is an issue with this diverse, lower income population, and one of the biggest factors we've experienced that has impacted retention is unstable living situations and disconnected phone numbers. Because of frequent moves and number changes, we obtain consent to contact families men's and gather as much contact information as much as possible from multiple family members. Once a patient has consented, research staff contacts the patient every six to eight weeks and update information as needed. Participants are also encouraged to call refer staff if they've moved or their phone number has changed. Slide 37 we've also found it helpful to make explicit exactly what will happen during their next took and this includes the name and number of the research assistant that will be contacting them, when that next contact will be made, will they be filling out a questionnaire, will they be watch ag video, will this be done over the telephone or will it be a home visit. Is there going to be any sort of payment, kind of more information that we can give them about what to expect the better and this information is often written down for patients and family members so they can refer to it at a later time. Finally, as with the initial recruitment and initial evaluations the flexibility of the research staff about scheduling time and location of follow-up visits is really vital to retention of participants over time. And now I'm going to turn this over to Dr. Struchen who is going to be speaking about a randomized clinical trial for persons with mild traumatic brain injury. >> MARGARET: Okay, slide 38, as I mentioned previously, some of the experiences that the strategies that we have utilized here at our center to try to facilitate participation of persons from diverse backgrounds such as the techniques that Dr. Clark just went over, come not only from our experience on the current RRTC grant projects but also come from our experiences with previous research. The previous funding cycle in which we were funded involved a risk factor study and a clinical trial of an intervention for persons with mild traumatic brain injury. And that experience really toed us as we were planning our studies for this current funding cycle. So I'd like to share with you some of our insurances on that particular -- those particular projects, some of our successes and failures, which we found as good lessons as we went forward. >> JOANN: This is Jo an again. Are we on slide 39 now? >> MARGARET: Right now. >> JOANN: Just a little reminder to slow down. >> MARGARET: Okay. So just to tell you a little bit about our previous studies, we had two studies that were conducted as part of our previous funding cycle. One was the initial study was a risk factor studies where we were looking at various factors that might predict poor outcomes after mild traumatic brain injury. So we were looking at specifically mild traumatic brain injury in these projects. That study was conducted in sort of a phased approach so that was the firs phase was a risk factor study and we followed that up by conducting some randomized clinical trials to evaluate the effective necessary (inaudible). So while we had quite a bit of experience in conducting outcome studies in our previous work and within the county system, and can utilize some of that information in our planning for the risk factors study, this is really our first foray into trying to conduct a clinical trial of a behavior room intervention which is a very challenging undertaking. Just to let you know a little bit about the studies to have a framework to understand the changes, we did two simultaneously conducted clinical trials. One with an uncomplicated mild traumatic brain injury population and one with persons who had complicated mild traumatic brain injury, and just briefly what I mean by that is those with complicated mild traumatic brain injury as defined by Williams and colleagues are those that met criteria for mild traumatic brain injury with regard to having brief loss of consciousness or alteration in consciousness, and scores of 13 to 15 upon admission to the emergency room, but had some kind of positive finding either on neuro-imaging studies or neurological exam. So those are considered complicated mild traumatic brain injury and previous research has demonstrated that these particular persons function more like persons with moderate traumatic brain injury with regard to their outcomes. So we thought it was important to look at those two groups separately. And this is our attempt to try to conduct these intervention trials of a behavior intervention and ethnically and socioeconomically diverse populations that is within the Harris County system. Slide 40, please, now the reason we thought that was an important undertaking to do was as Dr. Sander mentioned previously, most rehabilitation intervention that is have been tested have been looking at persons of higher socioeconomic status and primarily those from Caucasian backgrounds and that comes typically because these studies are being conducted in rehabilitation centers where funding for admission is one of the criteria for entry into the study. They have to have some sort of third party funding to actually provide care and so that tends to favor people from higher socioeconomic backgrounds and also because persons from ethnic minority backgrounds on over represented in lower socioeconomic status drupes, it the end to over sample those from Caucasian backgrounds. So our interest was, you know, although there has been few studies done looking at some of these crab interventions do they translate to more diverse population? So this are having a few studies looking at similar kinds of interventions in a primarily Caucasian and (inaudible) group and whether that same intervention would work in a more diverse population. We wanted to know whether the types of intervention ifs psychoeducational intervention that is we were using were well received by varying cultural groups. And then because our group here is not only comprised of researchers we're all clinicians as well. We have a very vested interest in looking at whether services that we are testing can be designed to low cost and feasible for delivery to those with limited resources. We have a true dedication to our county hospital population and trying to provide some sort of service and standard of care within the county system was frequently no service. And so our sort of second darer or actually primary interest real is I to see whether these programs and services may actually be implemented. And finally in this particular project we were looking at whether the intensity of services within (inaudible) would add to the literature. So do different types of services benefit those with more or less severe injuries within the mild category. So let me just tell you a little bit about a recruitment strategy, slide 41, please. >> JOANN: if you could just try and slow it down a little bit more. >> MARGARET: Sorry. Okay, as we've already discussed, our recruitment was being conducted within the Harris County Hospital District and since we were recruiting persons out of the emergency department, it was financially and physically impossible for us to recruit 24 hours a day, seven days a week. So we conduct a time sampling recruitment through the emergency department. And what we did was a preliminary study to determine where the highest admission rate was for persons with mild traumatic brain injury throughout the week and we sampled those time periods for recruitment for the study. Our initial plans and I'll say initial plans were to provide consent in the emergency department or to do -- to obtain as sent for persons who are confused or unable to provide consent and to do consent at a later sometime. We also spent a bit of time because of our previous experience in working with the trauma team conducting in-services with the trauma team to inform them about the study, to try to facilitate a collaborative environment within the trauma and emergency department, which is a very busy, hectic frantic paced setting. And so it's very important to have good relationships with the team members there. And then we also needed to recruit and have research assistants who are ethnically diverse in their background and who bilingual and comfortable with English and Spanish which is the two languages most frequently spoken in our community. We do have a fairly large Vietnamese speaking population here in the Harris County area, however, the number of persons admitted to Ben Taub who are Vietnamese speaking is very, very small and we were unable to have that sort of coverage. So slide 42, talk a little bit about lessons learned. First of all with regard to our idea about consenting people in the emergency department, now we were recruiting people with mild traumatic brain injury, so our idea was well they wouldn't be unconscious, they would be able to communicate with us and should be able to participate in a consent process. But what we discovered over the course of our early experiences in the grant was that really that time for trying to provide or discuss the consent form was really very difficult, even for those who were very well oriented. They are were frequently on back boards c collars and were very uncomfortable and it was just too distracting to try to really go over a consent form in any sort of detail. So what we ended up doing was majority of patients is obtain assent for later contact while in the emergency department and that became the case for persons who were cognitively oriented as well as for those who were not yet oriented. We knew from previous experience and really this was reinforced to us that discussing the projects with family members if present was a very vital piece of trying to keep people interested and involved and also having folks remember that the contact with us and so if' family members were present in the emergency department a great deal of time was spent in discussing with them. Because of our need to do assent in the emergency department and consent later on, our consent processes was frequently in the home environment and we typically scheduled that at the time we would actually schedule the initial assessment at the same time as providing consent. We also discovered that our population at the Harris County Hospital District had a large percentage of individuals who had difficulty reading. Many of our Hispanic participants have little or no formal education and reading levels were not at the eighth grade level of comprehension, but were frequently below the sixth grade level of comprehension or below. So we really had to spend a lot of time reviewing consent forms and reviewing them not only with the person with injury, but with family members so that everyone felt comfortable and felt like they understood projects as we went forward. With regards to learning lessons about collaboration, we know that our communication with the trauma team really increased identification of potential participants and increased the comfort level that the treatment team had with the research staff as well as our ability to provide service and support to patients in the emergency department. We frequently ended up providing a loft services with regard to providing information, even doing things like getting blankets, helping the emergency department staff with getting ice chips or whatever the person might require as an additional set of hands in the emergency department. And that sort of relationship facilitated or involvement both with the trauma team and with potential participants in the project. Rapport building we learned and we sort of knew, but we really became very clear to us that the relationship building was the key to actually getting people involved in research. And so we really focused a lot on that rapport building experience in the emergency department. Even though consent wasn't provided, we did spend quite a bit of time trying to establish a relationship which definitely facilitated later consent. We provided sort of a patient advocate role, an unofficial role in the sense that if persons needed services or information we would help to get the correct staff person there to help them. We would actually contact the official patient advocacy services to get them involved. We would make sure that social work was involved and so forth for various patients. Because many of the folks who have come into the emergency department are on their own, have little information about what's going on, our presence there was also a great source of emotional support to participants. We would spend time listening to their story, talking to them about their experiences, helping to explain a little bit about what was going on in the emergency department and so forth. And all of those sorts of techniques or those sorts of services really help to cement a relationship in which people felt comfortable in working with us with regards to research. As Dr. Clark mentioned, we also provided translation for Hispanic speakers for informal services anything that was official like a consent form or so forth we would require the official hospital translator to be involved, but it did facilitate a lot of service provision within the emergency department for us to be able to consent -- or to provide translation on the fly within the setting there. So the next thing we talked about with regard to these studies was regard to the zest Louisiana assessments we conducted. Slide 43 talks about the different sources of information that we did obtain as part of the study, both the risk fact tore study and the intervention study. We obtained information about preinjury history, including education, health, mental health and legal history. This was initially planned to be conducted also in the emergency department along with the consent process and as I just mentioned the consent process alone was difficult to do within the emergency department setting and certainly this initial interview was virtually impossible to do within the setting. And so we learned that that needed to be delayed until later time point. We also as part of the study conducted a baseline evaluation about two peaks post-injury for those who consented to the study where we evaluated post-con cuss I have symptoms, neuropsychological functioning, and also preinjury stressors, coping mechanisms and resources. And then finally, in terms of assessments we connected a follow-up evaluation three months after the baseline assessment or looked at post-con cuss I have symptoms as well as functional and emotional outcomes. Additional information that we obtained as part of our evaluation, slide 44, lists a few of the things that we were interested in to try to look at some of the diversity issues. We initially had people select their race or ethnicity background from a list and which we identified. We also then secondarily asked them to self-identify what thereat race or ethnicity is by describing what they consider themselves to be, what background they identified with. We also asked for whether or not they practiced any form of religion. We ask if they had -- what their primary language fluency was and we assessed reading comprehension level in a formal way. So slide 45, what did we learn about the a assessment process? As I mentioned, the consent process as well as the assessment process could not take placent emergency department. So the offering was made for either to have the evaluations conducted in the home setting or the clinic setting or the research center setting. And what we discovered was that home evaluations were most preferred with our population. This was due to the flexibility of scheduling, the comfort level of that setting and the convenience because financial resources were limited, trying to organize to transport to the Medical Center setting was a difficult for many families. In the event the financial resources were available, oftentimes the social support to provide that transportation may not be available. Therefore, we did conduct most of our evaluations in the home setting. We provided flexibility of scheduling as I mentioned. This is very important, our experience in the home setting was that researchers often were being hosted by the family and it is a very important part of rapport building. So our assistants and staff would go to the homes and frequently the family would ask to provide iced tea or coffee and it was really a chance for them to sort of entertain or host the researcher and accepting that graciously was one of the methods in which we really helped to establish a relationship with our families that were participating in the research. There are a lot of challenges to conducting these processes in the home setting. There is challenges to measurement validity, that is there is noise and interruptions and so forth that happen within the home setting that are difficult to control. Telephones ring, children come into the room and ask for milk and cookies and so that is something you have to sort of work around, and so it does have some effect on our ability to conduct certain kinds of testing in that setting, and it contributes to some lost data because of interruptions. There are also concerns with regard to privacy in the home setting, especially as we ask about sensitive issues like substance use, mental health functioning, emotional functioning, family functioning. And so that is also a concern and what we attempted to do is really spend a lot of time working with the patient and the family to try to preserve the privacy of the person as best as possible in that setting. Other challenges actually in doing home assessments which I'm not sure that many people are doing with regards to their research trials or survey studies, are really looking at safety issues, not only for the research assistant. We spent a lot of time thing about how we could go out safely into the communities. Some of our participants live in fairly challenging environments and so we developed a set of criteria for how to go about assessing the safety of those settings. If there was any reporting of legal issues, a history of violence that, sort of thing that would raise concerns, we would always have those participants come to the research center for their evaluations and we would provide funding for transportation if needed. And most every other case we would go out to the home setting whenever requested. And we asked our research assistants to use their best judgment if there was any concern at all regarding safety, they were requested to reschedule for another time, to do a drive by of the house or home location if it did not look safe we did not want our research assistants to put themselves at risk. So we asked them to use good judgment and there is frequently contact between the assistance and the psychologists or the principal investigators in the project. And additionally, we would go out in teams to the home. So we'd have a partner go out with the research assistant to help with safety issues. Another challenge to doing these kind of assessments in the home setting is this regard to issues that may come up such as the person reporting suicide tendencies. So we developed a set of procedures to try to evaluate that should that sort of concern come up and so these procedures were scrutinized involving the research assistant contacting the psychologist, the psychologist doing a phone-based assessment and depending on the outcome that have assessment, either set ag contract with the person or having them come and meet the psychologist at the emergency center or whatever might be indicated. So these are some additional challenges for people if you are looking at doing home-based assessments and or interventions, you real I have to look carefully at your protocols with regard to doing this kind of work in a safe manner, both for the research assistants that you will be sending out as well as for participants out in the community who may have crisis issues to be addressed. Other learned assessment lessons that we learned were with regard to the constructs we were measuring. With our population at Harris County, some of the psychological terms, our contacts may or may not be familiar to them or may or may not be as valued. And so we have some difficulties with some of our instruments in terms of the real translate-ability to persons with lower educational levels or who came from various backgrounds. Also psychological mindedness may be related to hire education levels and higher income groups. So some of our interventions which really focused on cognitive, behavioral interventions were sometimes challenging to implement in a population where that sort of intervention is not necessarily perceived as being one that would be chosen or effective in that population. So working a lot with the participants to try to increase comfort level and understanding of the approaches was something we had to spend some time with. Finally with regard to lessons learned in assessment, we learned a lot about working with persons with low reading level or limited language fluency issues. And what this required us to do was to frequently alter the administration of our instruments. So whereas the instrument may be a questionnaire, what we would do rather than giving the person the questionnaire and asking them to complete it, we would read the questionnaire to them and have a list of response choices that the person might point to or select. These are some of the kinds of administrative changes that we needed to make in order to assess persons who were unable to read the items for themselves. We often had to provide visual cues for responses. This increased our time to administer questionnaires or required the assessment to take a little longer than might be the typical case and so again flexibility with regard to the research staff and the time spent with patients or participants is key. And the other issue that we frequently encountered were issued with regard to pride regarding read ability and language fluency. What we did in our research and what we continue to do in our research is persons who are more fluent in English language are assessed in English and those who are more fluent in the Hispanic language are assessed in Spanish. For persons who are bilingual, sometimes there would be a pride associated with learning the English language and feeling comfortable using it and so we often had to spend time kind of addressing that and where Spanish was really the better Lang Wang to be tested in. We wanted to be sure they fully understood all the items that they were being presented. So we would encourage them to complete the assessments in Spanish whenever possible. And so sometimes they spent a bit of time in working with the person to feel comfortable about that. Also sometimes people are hesitant to mention that they have difficulty with reading. So what we would do is do a formal reading assessment and those who did not perform well in the reading assessment we would just go ahead and administer the questionnaires and actually in the end ended up administering the questionnaires in that manner to virtually all participants so no one felt they were getting special treatment with regard to their reading ability. So those are some of the lessons learned and have implemented in future research projects. Slide 46 talks a little bit about the intervention itself. Again, as I mentioned we had two clinical trials going on. Each of the clinical trials had a standard of care condition and a single session psychoeducational intervention condition. For those with complicated mild traumatic brain injury, also had a more intensive program that persons could be randomized to which involved individual sessions of family conferences and phone sessions as well as in-person sessions. So slide 47, the lessons that we needed to learn or we tried to learn with regard to this were looking at whether the setting mattered. Does a home-based intervention -- if it had differential effectiveness than a clinical setting. I don't think we answered that with this particular trial, but we felt like it was an important question and needs to be addressed further in future studies. Comfort level with the home-based intervention is another question that really needs to be addressed. Our perception was that the satisfaction of people who participated in our home-based treatments was high and so it's really something that needs to be explored in future research. Finally, the interventions that we did address or did utilize I should say were psychoeducational, cognitive behavioral interventions and there is a question about the face validity of this intervention, talk therapy versus more medical intervention in various populations and cultural backgrounds. That's something to explore further in one of our projects in the current grant looking at ethnic diversity issues really tries to address the attitudes that persons might have about various kind of therapies and so forth. Finally, I understanding the length and intensity of treatment does that vary by cultural background, are we going vary that with regard to expectations based on culture. And then what we did experience was probably the biggest lesson learned in doing behavioral intervention is the interest in services does not necessarily correlate highly with the actual participation services in terms of the treatment setting. Interest in services conflicted with daily stressors and a needs hierarchy. These people who are participating in the project with lower resources frequently have other stressors that are seen as more important and really are more important than participating in the intervention trial. For example, having moneys available to pay for food, electricity and so forth. And so sometimes those kinds of issues would really prevent persons from actually participating in the trial because other things had to be addressed within the home setting. So that's kind of in a nutshell some of the experiences that we had with that previous trial that formed our current reach. To give you an idea about the population we did evaluate in that trial, slide 48, we had 299 individuals that we recruited through the course of both the risk fact to study and intervention study and you'll see on the slide here the racial and ethnic background breakdown. We had about 15.9 percent that were white, 25 percent roughly that were black, 57.6 percent that were Hispanic or Latino background and then a small proportion of individuals that were from Asian American or other cultural backgrounds. 40 percent of our population made less than $20,000, and as you see, only 48 percent of our population had high school degrees or greater. Looking at additional information, we also noted that in our self-identified race ethnicity -- >> JOANN: Slide 49. >> MARGARET: There were a variety of labels that people self-identified and this was of interest to us rather than us putting labels on individual we wanted to see what they place upon themselves and these labels include country speak kinds of designations like Honduran, Mexican oh, Ethiopian American or mixed race ethnicity if I were Spanish Irish Indian, et cetera, and then we also had a number of individuals who identified unique labels like human, Buddhist, Caucasian, Cajun from Louisiana. So this is an interesting side project that we wanted to explore further in future studies, and as I mentioned before reading level was a major issue for us in terms of research and only 45.6 percent of our population had -- or actually 45.6 percent of our population had second grade or less with regard to reading comprehension levels. You see the changes faced in providing assessments in this particular setting. Now Dr. Sander is going to talk about the experiences we had in the current project to look at ethnic diversity. >> ANGELLE: That would be slide 50. >> JOANN: Dr. Sander, I'm going to ask again that you try your hardest to slow down. >> ANGELLE: Okay. We're going to be on slide 50. I'm going to switch gears to speak about measurement issues and specifically since our center is funded to look at community integration issues u I'm going to be focusing on measurement of community integration as an outcome and the implications for this when you're working with diverse populations. >> JOANN: Joann Starks again, I just wanted to remind you that we have about 20 minutes left. And so I don't want to rush you, but we might want to leave just a few minutes at the end or if we run over a little bit for questions that's not a problem. >> ANGELLE: So we're on to slide 51. And one of the first things to think about is what is the actual construct that you're measuring? When you're measuring community integration, we as researchers impart a certain meaning to that. And it's not necessarily the case that the people that we work with view community integration in the same way as we do. And I'm going to speak more about that in a few minutes. Familiarity or comfort with certain concepts like community integration is important to consider. Also it's important to look at the normative data that's available for measures of community integration and look at the compare ability of the normative sample to the persons that you're working with in terms of demographic characteristics like socioeconomic status, racial/ethnic characteristics, education, et cetera. Slide 52, as Dr. Struchen mentioned the translation of existing measures into different languages is not as simple as it might seem. There are a lot of issues. There cannot be a direct word for word translation, the meaning of that is often lost on participants, and what we have found is that even within the Spanish language, there are so many different dialects that what is understandable by persons from one particular place may not be the same language or the same wording that's used by persons from another place. So it's really important to have people not only have the measures translated, but also to have people from a variety of different dialects look at it for meaning. The different cultural belief systems on a person's response to standard measures is also important to consider. Many persons are unwilling to admit to psychological distress and can you try to couch the question however you would like, but many people can still see the hidden meaning and to them the hidden meaning is they are trying to see if I'm crazy. And that comes out a lot. So it's important to understand that perspective. Also some people are unwilling when you look at caregiver research which is a lot of what we focused on here in our center, people are unwilling to admit to feeling burdened. They see that as a negative term and they think they have a certain obligation to family members to help take care of them and so it would be to them unthinkable to admit that there were any sorts of stresses associated with that care giving experience. Trust of medical professionals is also an important issue to consider. Many persons from minority backgrounds tend to see medical professionals as sort of set a part and not understanding their needs, some justifiably so, and it's difficult for them to trust enough to respond honestly on some of the measurements. Slide 53, I'm going to use as an execs ample of difficulties in using these measures of diverse populations, a community integrate measure which was developed in 1998. And this is a subjective measure of community integration. It was meant to be from the consumer's perspective where some other community integration measures are meant to be more objective in terms of measuring actual activities and amount of participation in actual activities. This measure is meant to look more at a person's perceptions or satisfaction and feelings about community integration. Participants are asked to respond on a five point scale the extent to which they agree with various statements about community integration, an example of these statements are I feel like part of this community, like I belong here. And I can be independent in this community. Slide 54, the community integration measure was first developed based on responses of a focus group of 18 persons with traumatic brain injury in Ontario, and in the original article on this focus group and the results, and also in a subsequent validation study, race was not described. The validation of the measure occurred in a sample of 41 persons with moderate to severe TBI. A principal proponents analysis showed two main factors which were a sense of belonging and independent participation. So in our current study that we're conducting as part of our RRTC on community integration, we're recruiting consecutive traumatic brain injury admission at a county level one trauma center. It consists primarily of African American and Hispanic persons with brain injury. And at six months after injury, we're administering the community integration measure. Before we actually give the items on the measure, we ask a series of open-ended questions. They include how would you define your community or what is your community? Do you feel like you belong in your community. What things make you feel like you belong? And what things get in the way of you feeling like you belong? Those last three questions are questions that were used by colleagues during the focus groups in preparation for developing the community integration measure. And that first question, how would you define your community? Or what is your community? We asked because all of the questions on the community integration measure used the word community in them. And we wondered if our population would understand what that meant. So we asked that as a way of assessing that question. >> JOANN: That's slide 55. >> ANGELLE: I'm about to move on to slide 56. We noticed in asking this question that there was an overwhelming difficulty on the part of our participants in terms of understanding what is meant by community and conceptualizing community. The responses we got in our analysis showed that they varied and some of the main theme that is we saw were that it's the immediate vicinity where you live. So, in other words, your neighborhood. Other people thought that there was no one specific area that was encompassed by community. That it was defined by people, the people that you could count on for support, so it actually can include people outside of your neighborhood, for example, church members. Even if your church was know located in your neighborhood. Other people described it as where you spend the most time. So for one person they said that it was where they worked because that's where they spent most of their time. Other people described it as a group of people that took care of each other and some said where you grew up and it doesn't matter if you move away because the community is still where were you raised and where you have the most support and other people described it simply as their family. Slide 57, when we asked the question what things make you feel like you belong in your community, an overwhelming percentage of people said that they felt like they belonged if people just said Hi to them and acknowledged them. If they were able to walk down the street and people said hello to them and they were just acknowledging their presence, that made them feel like they belong. Safety issues were a huge issue with this particular population. So that we had many participants who during the course of the qualitative interviews talked about the fact that they did not feel like they belonged in their community because they didn't feel safe. And they felt like you know the presence of drugs or the presence of violence in their community made them feel unsafe and that made them feel like they did not belong. The presence of financial issues was also important to them in terms of describing community. So for several people, they talked about the fact that not being able to own a homemade them feel less a part of the community and they felt if they owned a home in that community or in another community, that they would feel that they belonged more. Being able to participate and be involved in community active fist was also mentioned as important. And I think that's the aspect of community integration that we focus on most as researchers. And while that was mentioned by a few people, it was not mentioned as frequently as these other things were in terms of their sense of community. Slide 58, so the implications of this are that many of our ideas as researchers about community integration are based on being able to participate in activities, but for many participants, especially participants from this diverse tobacco ground, community is more about an overall sense of belonging created by people caring for them and acknowledging them. Pair and so with low income or minority populations, environmental conditions related to safety may play a greater role than the injury in determining participation. So I think when we look at our outcome measures and look at a person's participation, we assume that their participation is directly related to their traumatic brain injury. And it may actually be the case that there are environmental factors regardless of the brain injury that are impacting their participation. And it's really important for us to keep that perspective when interpreting our date A. Slide 59, I just want to go over the other two widely used measures of community integration, which contrast to the community integration measure are considered to be objective measures. One is the community integration questionnaire, and it consists of three subscales, a home competency or home integration scale, which looks at independence in activities in the home, like financial management, meal preparation, et cetera. A social integration scale that looks at social activities, and then a productive activity scale that looks at work, return to school and return to volunteer activities. And the items on this questionnaire were developed by an expert panel, and validated on a sample of 231 persons with brain injury. The race was not described in the validation article, but 44 percent had attended or graduated from college, making it a lower -- a higher education sample. Our normative samples were -- or normative data were obtained from persons who visited a health booth at a county fair in upstate New York. The racial characteristics of this sample were not mentioned, however, one can assume from the location that it consisted of very few minorities. Slide 60, the Craig handicap reporting and assessment technique short form or the CHART-SF had subscales including physical independence, cognitive independence, mobility and occupation and this includes household activities and well-developed hobbies as well as work and academic pursuits. There is also a social integration scale and an economic self-sufficiency scale. Slide 61, the CHART was originally developed to assess community integration in persons with spinal cord injury, but various studies have shown that it has validity in persons with traumatic brain injury as well. And the items were constructed to assess a person's ability to participate in roles that are typically valued and expected by society. So of course work is one of those that we assume as typically valued by society. Slide 62, when the scoring of the CHART was developed, they decided to weight items that were weight participation and activities that were valued by society more than those activities that were less valued. So for example, work would receive a greater weight on the CHART when scoring than would an activity like a well-developed hobby or watching television. The race of participants was not mentioned in the validation sample or the CHART manual and it was not in the original CHART publication. 63, productive activities and social activities from the CIQ and CHART measures were listed on a measure that we developed -- not really a measure, but more like a survey we developed for our study that we're doing on ethnic diversity here and we called it perceived community integration needs and we took items from the CHART and the CIQ and just asked people to say were the items important to them. So we asked them to rate each item as to whether it was not important, somewhat important or very important. Slide 64, and the demographics of participants who answered to this questionnaire were 21, white, 57 black, and 56 Hispanic. 28 percent of them were born outside of the United States, which may also have a separate impact on responding. 21 percent were primarily Spanish speaking, and 31 percent made less than 20,000 per year in annual household income, with 47 percent making less than 30. So the preponderance of the evidence of people in our population or in our sample were actually low income. And 28 percent were unemployed prior to injury, raising concerns about the value placed on work for persons who may not have been working prior to injury. Pretty low -- pretty low educational level as well with a mean educational level of 11. 11th grade. Slide 65, when we looked at a comparison by race ethnicity of responses on the perceived community integration needs questionnaire, we saw that Hispanics had a lower education relative to blacks and whites, and that Hispanics were more likely to be born outside the United States. We saw no difference between the racial grews in terms of income levels. So we were getting a low socioeconomic sample across all ethnicities, which is consistent with the fact that we're conducting the stud any a county hospital system. Slide 66, I'm just going to go over than this was preliminary data because we are still collecting data on whites. And I'm going to go over briefly the percentage of people who rated activities as very important. 81 percent of people thought that working in a job for pay was very important. So that is a high percentage, but it also says that about 20 percent did not think that work was very important. Attending school or technical training was rated as very important by 65 or 66 percent of people. Parenting by 79 percent, housekeeping by 69 percent, food preparation by 71 percent, gardening by 29 percent, home repairs by 55 percent. Slide 67, home him prompt by 55 percent, playing sports by 40 percent, exercising by 70 percent, plagues games by 24 percent, watching television by 26 percent, listening to music by 41 percent and having a romantic relationship by 55 percent. Slide 68, 71 percent of persons thought that socializing with relatives was very important. In contrast socializing with friends was rated as very important by 47 percent of people. Raising the possibility that in this population people emphasized relationships with relatives as more important. Meeting new people was emphasized by 38 percent of the people, socializing with business associates by 47 percent, socializing with organizational associates like fellow church members by 43 percent. Slide 69, when we looked at some statistics comparing across race ethnicity in terms of importance of needs, we saw that cooking and food preparation were rated as more important for blacks and Hispanics relative to white also. Socializing with friends and listening to music were rated as more important by whites, and blacks and Hispanics rated school as more important. Slide 70, there were trends, and the trends are probably due to the fact that we have very few whites at this time point compared to the other ethnicities, and we expect to have an equal number by December. There was a trend for blacks and Hispanics to rate home ism prompt as more important. And to rate housekeeping as more important. And also to rate parenting as more important. Slide 71, music and games were rated by more important by persons who were born in the U.S. compared to persons born outside of the U.S. and the same for gardening. Persons who were born outside the U.S. who were largely Hispanic, rated gardening as more important. Slide 72, so in conclusion, the development of culturally sensitive outcome measures is really crucial in this population, and in developing these -- the use of focus groups of persons from different racial and ethnic backgrounds and who speak different languages is really going to be important. The measures shed capture outcomes and values that are important for persons from different cultures. So for example in our recent state of the science conference, it was brought up that for many Latino cultures, dancing holds a primary importance as a ritual and means of socialization, and we're not looking at that issue and nor is it on any of the outcome measures. So that's just one example of how capturing outcomes that are valued by certain populations should be considered. And the scoring should be rated accordingly. Slide 73, finally, normative data should be collected and it should be provided by not only different races and ethnicities but also different levels of education, different levels of income and different country of origin because all of these things can affect values and affect participation. And that is all of the information that we have. >> JOANN: I want to thank you very much. That was a lot of interesting, very interesting information that you shared with us over this past hour and a half. And we have come already to 90 minutes. So we're just running a little bit over, but that's not a problem at all. We have not had any questions come in by E-mail that I've been observing here. Frank, have you gotten any questions that I did not receive ahead of time? >> FRANK: No, but I would like to say that the presentation and discussion really generated a lot of really interesting and compelling questions and issues I think we could have a webcast or discussion on many of the questions about talk therapy as an issue and why it's not received well. I think that the group really addressed some very important or raised some very important questions about the issue of cultural competence and how you train your field workers to be culturally competent and how do you evaluate that. So I think that there are a lot of compelling issues brought up here. It will be great to have an opportunity to hear you elaborate on them or to go at some other time when we have an opportunity. I would also note that there is on slide 74 the contact information for your group. So if any of our listeners would like to contact you, we have that information on slide No. 74. >> JOANN: Yes, let's leave that there so that people can get in touch by E-mail or also check out the website of the RRTC. And that is at www.tbicommunity.org or you can find it directly there on slide 74. >> FRANK: Joann, if you don't mind, if I could ask one question to the group. During your presentation you mentioned that the Asian population was not well represented in many of the studies, and I know that Houston does have a significant Asian population. And I wondered if you have any thoughts about the reasons why do you suspect there could be potentially under utilization of services related to TBI or what other reasons might you suggest for differentials in that population compared to others? >> I think that a primary reason, unfortunately, is the lack of Ph.D. researchers as well as qualified research assistants who speak languages that would allow them to interact with those participants. It's difficult enough to find Spanish speaking research assistants, and virtually impossible to find Spanish speaking Ph.D. researchers and that has on huge impact because it's very difficult to conduct this research with interpreters versus, you know, bilingual research assistants. >> and I think furthermore because conducting most of our research in the Harris County Hospital District, and for whatever reason, and >> JOANN: Excuse me, I can barely hear you. Can you get a little closer to the phone there. >> Another reason I was mentioning is that most of our research is being conducted through the Harris County Hospital District and for whatever reason the numbers of subdivisions Americans who are admitted to Ben Taub Hospital seem to be lower than seem to be represented in the community at large. I'm not sure of why that is, but that is part of the problem as well is that we don't have a lot of people available at the site we're doing recruitment. So to really go out and capture those individuals would require going out into the community, seeing where those individuals are being treated, and as Dr. Sander mentioned having research assistants and staff who would be able to communicate with those individuals. So part of it happens to be our choice of recruitment site. >> FRANK: I agree. It certainly also could be the issue of stigma as it's perceived in the community. The other question that I had that I would enjoy hearing you elaborate on just briefly is the concept of talk therapy and how it is perceived and received and how it might be problematic for the populations that you're working with. >> Anecdotally, some of the participants that we had, for example, in the mild traumatic brain injury trial, it was difficult to recruit for that study, and I think part of it was the hesitancy to see that particular form of therapy as a valid one. Questions about medications that they might take or physical therapy treatments or things like that were often raised, and so that's really where that concern comes from. And you know, we had for a few of the persons that participated in the trial we had at least one person I can think of someone who had very low educational background and just really had a hard time in getting beyond talking about services. It ended up being much more referral and information kinds of approaches rather than talking about stress management or other kinds of techniques that we were trying to actually utilize during that intervention. So that really kind of captures our experience. Now, again, we had difficulty with recruitment so it was a relatively smaller sample size than we had hoped initially, and part of that was time commitment concerns, but also part of it I think was concerns about what that kind of treatment was. It was a lack of familiarity with that sort of approach for some of our participants that were recruited. >> Angelle, do you have anything else to add? >> ANGELLE: Yeah, I think part of it we talk a lot in abstract terms and it's really trying to bring it down to a much more behavioral level for those persons with more limited educational backgrounds, that any therapist would try to do in a particular setting, but because so much of our intervention was based on previous work where we were looking at studying expectancies about future recovery and that sort of thing, those kind of terms just aren't necessarily familiar. So it's really -- took a lot of reworking and trying to bring it down to a very concrete behavioral level. So as something to explore to how we can make some of those interventions, the techniques like stress management and so forth, how we can make that more user friendly for these populations. >> FRANK: Thank you. I also would just like to comment that your presentation and the description of your activities really suggest the importance of the need of incorporating culturally competent approaches within the research protocol, within the manual procedures as research is being planned from the very start. Because much of what you described is very detailed, complicated and challenging and I think unless we think about these issues at the very start, it's going to be difficult to incorporate them later down the road as participants are being recruited or we're considering how we can be more effective in incorporating diverse populations in the research study. >> Agreed. I think it takes a lot of time and effort on part of the research staff to really be able to have that training and also that flexibility that's required to really enroll people. >> JOANN: Thank you very much. I do appreciate all of your wise words today and I know that we will get some questions after the fact, and we do encourage people to just go ahead and send your questions to us at webcast@ncddr.org, and we will get the questions forwarded on to our presenters. I think we have come to the end of today's session. And I want to thank Dr. Sander, Dr. Struchen, Dr. Clark and Dr. Evans very much for your presentations and thank you to everyone who came to the webcast this afternoon. I also want to encourage everyone who did participate to fill out our brief evaluation form. This will be helpful to us at the NCDDR as well as to our presenters. It just takes a few minutes and can you do it right now before we sign off. If you click on the downloads tab at the bottom far right of your Windows Media Player or RealPlayer screen, you will find a direct link to the evaluation form. You can also find a link to this evaluation formulator on both the ILRU and NCDDR web pages related to the webcast. Also and audio file and a transcript of the webcast will be available on the ILRU website archive page in just a couple of days at www.ilru.org. Please tell your colleagues who were not able to participate today that they can visit the archives to review these files very soon. I want to thank the National Institute on Disability and Rehabilitation Research, NIDRR, that provided the funding for the webcast and I want to especially thank the webcast team at ILRU. Because without their efforts this presentation would not have taken place. Once again, thank you on behalf of my cohost Frank Martin and the rest of the NCDDR staff. We'd like you to join us for our next webcast which will take place on Wednesday, September 26th on the topic of dissemination of Native American research. Goodbye.