Yale Psychiatry Grand Rounds: November 19, 2021
November 19, 2021Information
"One Size Does Not Fit All: Transitioning to a Community Engaged Approach in Cultural Adaptation."
A. Kathleen Burlew, PhD, Professor, University of Cincinnati.
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- 00:00I I don't know if you can see me I I
- 00:03guess a little little box on this side,
- 00:05so this is John Crystal and I
- 00:09want to welcome you to the 2021 E
- 00:12Morton Jellinek Memorial Lecture.
- 00:15Before I introduce Doctor Angela Haney,
- 00:17who will introduce our speaker today?
- 00:19Doctor burlew.
- 00:20I I thought it would be good after
- 00:23several decades of having the Morton
- 00:26Jellinek Memorial Lecture to actually
- 00:29tell you a little bit about the Morton
- 00:32Jellinek so that you can learn more
- 00:34about the history of our department.
- 00:37Because it's a remarkable history
- 00:39with extraordinary people who've made
- 00:42important contributions to our field.
- 00:45So, uh. Add. Eat E.
- 00:50Morton Jellinek,
- 00:51known to his friends as Bunky,
- 00:53was born in 1890 in New York City,
- 00:56but he spent his early life in Hungary.
- 00:59He studied at the University of Berlin
- 01:02Biostatistics in Physiology and
- 01:05simultaneously at the universities
- 01:07of Grenoble, Grenoble and Light.
- 01:11Sick multiple topics concurrently.
- 01:14He was said to be fluent in nine
- 01:17language and converse is conversant
- 01:20in four more languages.
- 01:22919 twenty under a period of time of of.
- 01:27I, I believe, financial difficulty.
- 01:30He engaged in illegal currency
- 01:32speculation in Hungary,
- 01:33and there was a warrant out for his arrest.
- 01:36And so he fled,
- 01:38uh,
- 01:39to Sierra Leone first and then Haiti aware.
- 01:43He studied bananas and actually wrote papers
- 01:47on bananas for the United Fruit Company,
- 01:50which as you know,
- 01:51has a very infamous and and troubled history.
- 01:56Nonetheless, at the end of the
- 02:00at the end of the period of
- 02:01time of his arrest warrant,
- 02:03he got a job as a psychiatrist
- 02:05at Worcester State Hospital,
- 02:07which at the time was a trailblazing.
- 02:11Program of in psychiatry. Uhm?
- 02:17He came to Yale in 1939 and I'm
- 02:21going to talk about those years.
- 02:24In just a little bit and stayed
- 02:27at Yale until 1946 when he took a
- 02:29job in Geneva as part of the World
- 02:33Health Organization where he led the
- 02:35Subcommittee on the Committee of Sub Alcohol,
- 02:37Subcommittee of the Committee
- 02:39of Mental Health.
- 02:40After his time with the
- 02:41World Health Organization,
- 02:42where he had also had a significant impact
- 02:45on the field of alcohol and addictions,
- 02:48he went to Canada,
- 02:49where he was Simon simultaneously the head
- 02:51of the Alcohol foundation of Roberta.
- 02:53And the Alcohol Research Foundation Ontario.
- 02:56And if you know Canada,
- 02:58you know that Alberta is far
- 03:00West and Ontario is Far East,
- 03:03so he was covering and playing an
- 03:07enormous national role related
- 03:09to addictions in Canada.
- 03:11He concluded his career at
- 03:15Stanford University.
- 03:16Where he died in 1960,
- 03:19completed his career and died in 1963.
- 03:23So I wanted to say in particular a
- 03:25little bit about the Yale Center
- 03:27for Alcohol Studies,
- 03:28because in some ways it's the foundation
- 03:31for what has developed in our communities.
- 03:35And been sustained,
- 03:37particularly with the revitalization
- 03:39of the substance abuse program,
- 03:41by her cleaver and then 1960s,
- 03:44and continues to this day.
- 03:48The Yale Center for Alcohol Studies
- 03:50was driven in in part by the
- 03:54repeal of Prohibition in 1933.
- 03:58The Carnegie Corporation created
- 04:00something called the Research
- 04:01Council on the problems of alcohol
- 04:04with Jellinek as its leader,
- 04:06and this was the first major
- 04:10multidisciplinary alcohol
- 04:11related program in the world.
- 04:14Yale recruited Jelinek
- 04:16and this program in 1935,
- 04:20establishing the Laboratory of Applied
- 04:23Physiology which I was surprised to
- 04:26learn was located in Pierson College,
- 04:30one of the undergraduate colleges on campus.
- 04:34The center funded also and created
- 04:37the National Council of Alcoholism,
- 04:40which persists to this day under
- 04:42the name the National Council on
- 04:44Alcoholism and Drug Dependence,
- 04:46a nonprofit advocacy organization.
- 04:50As I mentioned, Jelinek left Yale in 1946,
- 04:53although he moved to Texas Christian
- 04:56University from Yale and established
- 04:59the Yale Center for Alcohol Studies
- 05:02at at Texas Christian University.
- 05:05The fine after Jelinek left the Yale
- 05:09Center for Alcohol Studies continued at Yale.
- 05:13Although under very difficult
- 05:16financial situations,
- 05:18conditions and in 1960.
- 05:23The Yale President,
- 05:24then a Whitney Griswold began.
- 05:29Pushing for the alcohol
- 05:32center to move elsewhere,
- 05:34and in fact in 1962,
- 05:37that center moved to Rutgers,
- 05:39where it continues in in
- 05:41in a version to this day.
- 05:46So let me say
- 05:46a little bit about the the five
- 05:48pillars of the Yale Alcoholes
- 05:50Center for Alcohol Studies,
- 05:51and this is on the right hand side.
- 05:53You can see an actual page from
- 05:56one of the papers on the Yale
- 05:58Center for Alcohol Studies.
- 06:01The first pillar was research physiological,
- 06:04psychological, cultural, legal,
- 06:06educational, economic and medical.
- 06:10Really multidisciplinary initiative
- 06:12which would have been unheard of.
- 06:16Uhm, elsewhere at that time.
- 06:21Uhm, Jelinek became the editor of the
- 06:25Quarterly Journal of Studies on alcohol,
- 06:28the First journal devoted
- 06:31to alcohol research,
- 06:32and that journal continues to this day
- 06:35as the Journal on Studies of Alcohol and
- 06:39substance abuse or something like that.
- 06:42The third pillar was education and as part
- 06:45of the Yale Center for Alcohol Studies,
- 06:47they established the summer
- 06:49School of Alcohol Studies,
- 06:50which was a major national
- 06:53educational initiative for which
- 06:55the center was very highly regarded.
- 07:00And then the the the Research Center had
- 07:04within it a a clinical research program
- 07:08which was also a multidisciplinary,
- 07:11very sophisticated approach,
- 07:13quite groundbreaking for its time,
- 07:16who was called the Yale plant for Diagnosis,
- 07:20treatment, research and training.
- 07:22So a really cutting edge clinic embedded
- 07:26in an educational and research initiative.
- 07:29And they provided other services
- 07:32to this field so.
- 07:33Uhm,
- 07:34this kind of initiative exists
- 07:37only in a few places.
- 07:39Yale continues to be one of those places,
- 07:42but only in a very few places
- 07:45around the country.
- 07:46Now you can imagine how transformative
- 07:49was as the first major initiative
- 07:52of its kind in its day.
- 07:54One of the things that Jelinek
- 07:57is best known for, UM,
- 07:59was a book that he published in 1960,
- 08:02which was called the disease
- 08:05concept of alcoholism.
- 08:06And and what Jellinek was trying
- 08:09to do was to combat the idea.
- 08:12Uh, that?
- 08:13Uh,
- 08:14addiction and particularly alcohol
- 08:16use disorders were a moral lapse.
- 08:19In other words,
- 08:21that drunkenness was a problem
- 08:23simply of the moral.
- 08:28Limitations of people who
- 08:30developed alcohol problems.
- 08:31And he did in many ways contribute to
- 08:35the medicalization of addiction which
- 08:38has in some ways progressed with the.
- 08:42Bro, science studies of addiction.
- 08:44But Jellinek himself was actually
- 08:47quite a nuanced and clever
- 08:50clinician sensitive clinician.
- 08:53He tried to subtype alcohol
- 08:55into different versions,
- 08:57only some of which were that he were
- 08:59forms that he considered to be diseases
- 09:02characterized by loss of control.
- 09:05Uhm, and he also believed very much
- 09:09in in social and cultural aspects.
- 09:13Influencing alcohol consumption
- 09:14and he did not draw a clear line
- 09:18between healthy levels of drinking
- 09:20and pathological levels and drinking.
- 09:23Instead,
- 09:23he tended to view levels of drinking
- 09:26as being important to norm with respect
- 09:29to cultural and other social factors.
- 09:31So he was quite a sophisticated
- 09:34and thoughtful researcher,
- 09:35although he did of course
- 09:38create the disease concept.
- 09:41Uhm, it is said of Jelinek.
- 09:44With the help of EM Jellinek,
- 09:47the modern era of addiction
- 09:49science was launched with the
- 09:51physical infrastructure and the
- 09:53intellectual capital needed to form an
- 09:56interdisciplinary field of basic research,
- 09:58applied science and clinical practice.
- 10:01His impact is so significant
- 10:05that foundation or not nonprofit
- 10:08was created to recognize.
- 10:11His impact on the field of addiction,
- 10:13which is called the EM at
- 10:16EM Jellinek Memorial Fund.
- 10:18And every year the EM Jellinek
- 10:21Memorial Fund presents one of the most
- 10:24coveted awards in addiction research,
- 10:26which is the EM Jellinek Memorial
- 10:29War which comes with this.
- 10:31Extremely heavy statue.
- 10:35And but it's very nice one.
- 10:38So this is Yale addiction.
- 10:42This is the history of of one of
- 10:44the ways that our department has
- 10:47contributed to the emergence of the
- 10:50modern field of of of addiction,
- 10:53and a legacy that all of you share
- 10:55as being part of the Yale community.
- 10:58So I thought it would be was important
- 11:00for all of you to know about this and
- 11:03to be proud of the ways in which.
- 11:06Yale Department of Psychiatry
- 11:08has helped to kind of create the
- 11:11modern field of addiction.
- 11:13So with that I'm going to stop.
- 11:15I'm going to stop sharing my screen and.
- 11:20And maybe Doctor Haney can begin
- 11:23her recorded presentation.
- 11:25I will start that for her.
- 11:44Good morning everyone.
- 11:45It is with great pleasure
- 11:47that I introduce doctor Kathy Berliew to
- 11:50give the Jellinek Memorial lectures back.
- 11:54Lose professor emeritus at
- 11:56the University of Cincinnati,
- 11:57and her research focuses on substance use,
- 11:59disorder, treatment and HIV prevention
- 12:01with a focus on people of color.
- 12:04She first received her doctorate
- 12:06in social psychology from the
- 12:07University of Michigan and later a
- 12:10trained in clinical psychology at
- 12:11the University of Miami in Ohio.
- 12:14Doctor Burlew was selected to be our
- 12:17distinguished lecture this year.
- 12:18Given her extensive work on culturally
- 12:20appropriate research methods in general,
- 12:22and specifically within the field
- 12:24of addiction research.
- 12:25If you haven't already,
- 12:27please check out one of our recent
- 12:29articles entitled Best Practices
- 12:30for research in diverse groups,
- 12:34Doctor Blue,
- 12:34the champion of ensuring people of
- 12:37color equitably benefit from research.
- 12:39She has chaired the Minority interest
- 12:41group of the Night in Clinical
- 12:43Trials Network for several years.
- 12:44And is currently Cokie.
- 12:46Honesty and grant to assess the
- 12:48comparative efficacy of multiple substance
- 12:50use treatment interventions for black
- 12:53people in substance use disorder.
- 12:54She has published numerous articles
- 12:56on cultural adaptation of evidence
- 12:59based treatments among her recent
- 13:01publications include her model community
- 13:03collaborative cultural adaptation for
- 13:05implementing academic and community
- 13:07partnerships to address community
- 13:09problems which we'll hear more about today.
- 13:12I first met Doctor Birlew when
- 13:14I was a graduate student.
- 13:16She was assigned as my mentor through
- 13:18the Psychology Summer Institute,
- 13:20and in addition to her many accolades.
- 13:23Dr Blues,
- 13:24very passionate about supporting
- 13:26early career researchers,
- 13:27including researchers of color and
- 13:30she's intentional about sharing
- 13:31opportunities that support career
- 13:33advancement and using her position of
- 13:35power within the night of Clinical
- 13:37Trials Network to ensure the needs of
- 13:39early career researchers are heard.
- 13:41And so I continue to benefit tremendously
- 13:43from Doctor Burlew's mentorship.
- 13:46And so it truly is an honor for me to
- 13:48introduce her today and to acknowledge the
- 13:51impact that her work has had on the field.
- 13:54So, without further ado,
- 13:55I will turn it over to
- 13:57Doctor Who to present one.
- 13:59Size does not fit all transitioning
- 14:02to a community engaged approach
- 14:04to cultural adaptation.
- 14:06Thank you.
- 14:09Good morning, let me just share my screen.
- 14:30Hold on just a second here.
- 14:41Might be able to just say cancel for now.
- 14:51Be with you in a minute here. Having trouble.
- 14:57Kathy, if you just say cancel on that
- 15:00little pop-up, it might be OK. Cancel
- 15:03on the little popup where oh OK. OK,
- 15:08be able to start from the
- 15:10beginning. Oh, there we are.
- 15:15Uhm? Thank you everyone for
- 15:19joining and thanks first to uh,
- 15:23to doctor Angela Haney for
- 15:26that Nice introduction.
- 15:28We do go way back to when she
- 15:31was a doctoral student at
- 15:33University of Missouri and then,
- 15:36as she said, we we were paired.
- 15:39I was her AP, a mentor at the Psychology
- 15:44Summer Institute and over the years.
- 15:48We have become colleagues and
- 15:51she's actually LED some projects
- 15:53that that I've been a part of.
- 15:56Thank you to the group for inviting
- 15:59me to speak at this memorial lecture.
- 16:03I too did a little research on
- 16:09Doctor Jelenik and I came away
- 16:13both impressed and intimidated.
- 16:17That along with his work in.
- 16:20Addiction sciences.
- 16:21He was also a biostatistician
- 16:24as Doctor Crystal,
- 16:25said Anna physiologist and anyone
- 16:29who could speak nine languages
- 16:32and communicate and for others.
- 16:35That's just a very impressive.
- 16:38How does one person do that
- 16:41much in one lifetime?
- 16:43So, uhm, I'm showing on the screen now.
- 16:47My research team and you'll see
- 16:50that my research team includes both
- 16:53academic members and Community members,
- 16:57and I'm going to have an opportunity
- 17:00to share quite a bit on that today.
- 17:03And I have no no conflicts to disclose.
- 17:09Let me just ask across the screen
- 17:12as I see it, there's a banner.
- 17:14That says I'm screen sharing just
- 17:17as long as you're not seeing that.
- 17:19Sure,
- 17:19sure you're not seeing that right
- 17:21that banner that says screen sharing.
- 17:28I'll assume that your
- 17:29slides. Your slides look perfect. Thank you.
- 17:31Alright, thank you so.
- 17:35What planted the seeds for the work that
- 17:39I'm doing today were planted years ago?
- 17:43As Angela mentioned, I started out
- 17:47my career as a social psychologist.
- 17:50There was always this part of me
- 17:52when I was in the PhD program
- 17:54at the University of Michigan,
- 17:56there was always this part of me that
- 17:58had an interest in clinical work as well,
- 18:00and so for my first sabbatical,
- 18:02that was my opportunity to take 2 1/2.
- 18:06Years and retrain in clinical psychology.
- 18:08And I mentioned that because the seeds
- 18:11for the work that I'm talking about
- 18:14today were planted during that time.
- 18:17One of my classmates when I was
- 18:20retraining in clinical psychology
- 18:22mentioned that he treats everybody
- 18:25the same and he took a lot of pride.
- 18:29Justin saying that I treat everybody
- 18:31the same and and even back.
- 18:33Then before I was doing the cultural
- 18:36adaptation work that felt a little
- 18:39strange to me that everybody
- 18:41might not respond the same way to
- 18:44to treatment so later.
- 18:47Come in the early years of and
- 18:49I'm assuming people know the
- 18:51night of clinical trials network.
- 18:53I'll say a bit about it later on.
- 18:57Later, Bill Miller was a member,
- 19:00active member of CTN for a number of
- 19:03years and in one of his publications he
- 19:06said suppose your physician says to you,
- 19:08I really don't pay much attention
- 19:10to medical research.
- 19:11I've been treating people like you
- 19:13for 30 years and I know what works.
- 19:15Would you go back or would you
- 19:18find yourself another doctor?
- 19:20We quoted that that statement by Bill
- 19:24Miller in one of our publications.
- 19:27And really kind of added to it.
- 19:30Now imagine that you also learn that
- 19:33your physician uses the same dose of
- 19:37the same medication for all clients
- 19:40with the same medical disorder.
- 19:43Ah,
- 19:43without even considering whether
- 19:46available scientific evidence
- 19:48suggests certain types of patients
- 19:50are more or less likely to respond
- 19:53to that medication now,
- 19:55what's the chance that you would
- 19:57go back for for for a second visit?
- 20:01Uhm?
- 20:03We have evidence that that statement
- 20:05is consistent with evidence within
- 20:08the night of clinical trials network.
- 20:11We have evidence in multiple studies
- 20:15that behavioral interventions don't
- 20:17always work the same across groups
- 20:20and across in particular across
- 20:23racial ethnic groups.
- 20:26So right now I have some work
- 20:28going on in my house.
- 20:30My bank, my basement,
- 20:32had a a flooding problem.
- 20:34Ah, and the contractor.
- 20:35I told the contractor not to
- 20:38come today because, you know,
- 20:39I didn't want that.
- 20:40Banging was presenting and so he
- 20:42asked me about my presentation
- 20:45and I was sharing with him.
- 20:48I was talking about how different
- 20:50treatments don't work the same across
- 20:52different groups and he had a very
- 20:54puzzled look on his face on wide treatments.
- 20:57Would work differently across
- 20:59different racial ethnic groups.
- 21:02My answer to him is a little different.
- 21:04Then the answer that I'll give to you,
- 21:07but my answer to you is
- 21:10that we have evidence
- 21:11that different groups are affected by
- 21:15contextual factors bring different
- 21:18contextual factors to treatment
- 21:20and that those contextual factors
- 21:23affect their response to treatment.
- 21:26Things like their pathway to treatment,
- 21:30patterns of treatment, engagement,
- 21:32cultural attitudes, all those maybe.
- 21:35Yeah, uh, issues that affect
- 21:38their response to treatment,
- 21:40and for that reason some of us
- 21:43have concluded that behavioral
- 21:45interventions developed for one
- 21:47target group cannot be assumed.
- 21:49They have to be tested.
- 21:51They cannot be assumed to be as
- 21:54effective for a different target group.
- 21:57And when it turns out that they are
- 22:01not working as well for a different
- 22:03target group cultural adaptation.
- 22:06Is one strategy for improving
- 22:09effectiveness and.
- 22:12My definition that I got from
- 22:14one of my readings,
- 22:16I didn't develop it myself,
- 22:18is that cultural adaptation is
- 22:21modifying an evidence based
- 22:24intervention to be more appropriate
- 22:27for a specific target group,
- 22:29and we're making it more appropriate
- 22:33by incorporating aspects of the
- 22:35group's culture that are related
- 22:38to their substance use.
- 22:39And so we say well why?
- 22:42Why would we pick that strategy
- 22:44of culturally adapting when an
- 22:46intervention isn't working well?
- 22:48Well, we have some evidence.
- 22:50Some of the most some of the strongest
- 22:54evidence comes from a meta analysis
- 22:58that Doctor Nagayama Hall published
- 23:01and in his meta analysis he he.
- 23:04He reviewed a number of studies
- 23:07and found that in many cases
- 23:10the culturally adapted version.
- 23:13Was more effective for a specific target
- 23:16group than the generic version had been.
- 23:19And so,
- 23:20uhm.
- 23:21When we say cultural adaptation,
- 23:24we're we're talking about us,
- 23:27a broad group of activities,
- 23:32and so I wanted to say something
- 23:34just a just a little something about
- 23:37some of the types of adaptations
- 23:39that that might be considered
- 23:42Resnik al at at at Michigan,
- 23:46differentiated between what he
- 23:48called surface adaptations and deep.
- 23:52Structural adaptations surface
- 23:53adaptations are pretty much what
- 23:56the way they sound that the
- 23:59core curriculum is unchanged,
- 24:01but you alter the presentation.
- 24:03You might bring in different names
- 24:05for the role plays or share the role
- 24:07plays or or modify the role plays a
- 24:10bit so that they fit the cultural group,
- 24:12but deep structural adaptations.
- 24:14You're also keeping the core
- 24:17components of the intervention,
- 24:20but you're incorporating the culture.
- 24:22Social experiences and values of the
- 24:26target group that might be related to
- 24:30substance use within the night of CT,
- 24:33and we have examples of both.
- 24:35We have examples of surface
- 24:37interventions and of deep structural.
- 24:39The one surface intervention that
- 24:41I'll talk about is CTN 21 and that
- 24:44was a Spanish language version of
- 24:47motivational enhancement therapy where
- 24:50a sensually they translated the.
- 24:53Generic intervention into Spanish and
- 24:56then recruited Spanish speaking staff,
- 24:58but now CTM 33 which was a Met
- 25:03study among American Indians.
- 25:08They took a different approach
- 25:10and I see and in that case in that
- 25:14particular study they looked at
- 25:16what role does the communities
- 25:18culture play in the prevention of
- 25:21substance use and in response to
- 25:25substance use treatment,
- 25:26and then the second question
- 25:28was how best to address those
- 25:31cultural issues in an intervention.
- 25:33So it's their preliminary research that was.
- 25:38Uh, I see as an example of
- 25:42deep structural modifications.
- 25:46So when we are culturally
- 25:49adapting an intervention,
- 25:51there's evidence to suggest that
- 25:55community engagement might be helpful,
- 25:58just involving the group, the target group.
- 26:01That's the focus of the
- 26:04cultural adaptation our team.
- 26:08Ah, it is.
- 26:11Likes to think of this on a continuum
- 26:14on a continuum that ranges from
- 26:17very little community engagement to
- 26:20quite a bit of community engagement.
- 26:23You'll see it at the top
- 26:27investigator research.
- 26:28In this continuum has little
- 26:31community involvement,
- 26:33but as we move through the continuum,
- 26:36community based participatory research,
- 26:38the Community ends up having oftentimes
- 26:42has some decision making power,
- 26:45and in community driven,
- 26:48the research implementation
- 26:50is actually at least partly
- 26:53controlled by community members,
- 26:56so we're going to see.
- 26:58This continuum throughout
- 27:00my presentation and then,
- 27:02and as it applies to my research,
- 27:06and this is just a different way
- 27:09of displaying it from investigator
- 27:11driven to community driven.
- 27:17Research. So we do as as Angela said,
- 27:23we do sexual health research and
- 27:26we we ask ourselves the question,
- 27:29how do researchers actually involve
- 27:32the Community when they label their
- 27:36projects as CBPR and so we did?
- 27:39A review paper.
- 27:41A review of literature search
- 27:43and a review paper.
- 27:44Just trying to address that that question.
- 27:49We did a.
- 27:50Aprisma search and started out
- 27:52with many more articles than
- 27:55been our category criteria and
- 27:58finally in the end we were down
- 28:01to 24 that met our criteria of.
- 28:07Labeling their projects as CBPR
- 28:11and they were looking at sexual.
- 28:14The development and adaptation
- 28:17of sexual health interventions.
- 28:19Let me tell you a little bit about
- 28:21those findings and and and what the
- 28:25different researchers were doing
- 28:27when they said they were doing CPR.
- 28:30Eight of those 24 involved representatives
- 28:34of agencies serving the target group.
- 28:38So their community partners
- 28:40were not target group members,
- 28:42but they were representatives of
- 28:44agencies once studied by Romero,
- 28:46for example.
- 28:49Worked with Planned Parenthood staff.
- 28:53Now there was another group of
- 28:55four that said they were using
- 28:57CBPR and they didn't really tell
- 28:59in their articles exactly how
- 29:02the community was involved,
- 29:03so I'm I'm not going to list any of
- 29:07those studies, but there there were.
- 29:10Twelve were members of the target
- 29:13group were directly involved.
- 29:15One of those was by Rios Ellis,
- 29:18and in that case.
- 29:19Uh,
- 29:20they actually added peer
- 29:22educators to the research team,
- 29:25and like the other eleven in that category,
- 29:29the commute,
- 29:30the target group members were involved
- 29:33in preliminary research design they were
- 29:36involved in in choosing the instruments.
- 29:40Partnering.
- 29:40Of course, with the academic team,
- 29:43they're involved in recruitment,
- 29:45facilitating the intervention
- 29:47data collection and data.
- 29:49Analysis,
- 29:50and so we concluded that some people
- 29:56are some teams that say they are
- 30:00doing community engaged research,
- 30:02like the level one on the previous slide.
- 30:06While we're doing something that,
- 30:07at least on this continuum would be
- 30:11called community placed research
- 30:13and Romero was an example of that.
- 30:16But others, and and real zealous.
- 30:20I was doing something where the
- 30:23community had real decision making
- 30:25was involved in decision making
- 30:27and some role in the implementation
- 30:30of the research and so others
- 30:32were doing something called CBPR.
- 30:36So we could we concluded that.
- 30:40At people implement CBPR in multiple ways,
- 30:45and so when you hear it's a CBPR study,
- 30:47you have to look more closely just
- 30:51to see how the how the community
- 30:54was involved and how the target
- 30:56group was involved.
- 30:58So I'm going to move now to our journey.
- 31:01Our journey is a trend we we had a
- 31:05transition towards a community engaged
- 31:08approach to cultural adaptation.
- 31:10And there's several stops in our journey.
- 31:14And it's it's an evolution.
- 31:16The evolution of RRRR of our work.
- 31:22It starts with rimas. Real men are safe.
- 31:26And then we're going to go briefly
- 31:28to safer sex skill building,
- 31:31SSSB and then a teen version of of SSSB.
- 31:37So our journey started with a Naida
- 31:40national drug abuse treatment,
- 31:42clinical trials network intervention.
- 31:45I've mentioned the CTN several times
- 31:48and I think probably most people are
- 31:51familiar with it, but just in case,
- 31:53there's someone who's not.
- 31:55It's a collaboration of researchers and
- 31:58providers to test substance use treatments
- 32:01in large multi site clinical trials.
- 32:05One of those trials was rimas.
- 32:09Real men are safe and it was led
- 32:12by the late Doctor Don Callsen,
- 32:15and I'm I'm really addicted to him for
- 32:19getting me started on on this path.
- 32:22Doctor Coulson.
- 32:25Implemented and evaluated real men
- 32:28are safe within the clinical trials
- 32:32network across several sites and
- 32:35his findings were quite positive
- 32:39compared to the comparison group.
- 32:42The men who participated in
- 32:45real men are safe.
- 32:47Reported more condom use in
- 32:50their sexual encounters.
- 32:51They reported less sex with drugs.
- 32:55And the intervention was.
- 32:58Was strong enough to be added to the
- 33:02CDC Compendium of HIV prevention,
- 33:05evidence based interventions,
- 33:07but when Doctor Coulson looked more
- 33:11closely at the Black men in his his sample,
- 33:15he he found that the outcomes were
- 33:18working better for white than black men.
- 33:22And that's when and I'm always
- 33:24be thankful to him,
- 33:25that's when he invited me into to.
- 33:29Think some about the patterns
- 33:31that we were seeing.
- 33:32This was from the generic version.
- 33:35This was what he was finding that the
- 33:39Y axis is the percentage of men who are
- 33:44reporting condom use 80% of the time.
- 33:47The bars on the left or baseline and
- 33:50the bars on the right are at the I
- 33:53think it was a three month follow up.
- 33:56And the blue bars are white men,
- 33:58and the orange bars are black men
- 34:01and you could see a baseline.
- 34:03There was not much difference.
- 34:05Neither group was reporting that
- 34:08they were using condoms.
- 34:1080% of their sexual encounters.
- 34:13But now if we look at follow up,
- 34:15you see that the white men seem to
- 34:18be benefiting much more from the
- 34:22intervention than the black men.
- 34:24And so doctor Carlson.
- 34:27Was concerned about that and
- 34:30invited me to work with him on.
- 34:33Trying to develop a better version
- 34:36of the intervention that would
- 34:38be more effective for black men.
- 34:41And again we knew about Doctor Nagayama
- 34:46Hall's work that cultural adaptation
- 34:49might be a strategy that we would
- 34:52consider for improving the outcome.
- 34:55Improving the intervention for black men.
- 34:59So this was new to us and so we look even.
- 35:03Ourselves,
- 35:04we published and we did some review and
- 35:07and published an article on cultural
- 35:10adaptation and in at that time we
- 35:13were calling it substance abuse treatment.
- 35:16And what did we learn for?
- 35:19From our review,
- 35:20we learned that there were maybe
- 35:24three methods of cultural adaptation
- 35:27that groups were were using.
- 35:30One method was to incorporate
- 35:33the literature review.
- 35:34A second was to involve experts,
- 35:37and a third was to involve the target
- 35:39or the Community group and many times
- 35:43people were using some combination
- 35:45of these. So our aim was to ensure
- 35:48that we were including deep
- 35:51structural strategies in our approach.
- 35:53You remember the deep in the deep
- 35:57structural approach where actually
- 35:59incorporating some of the cultural
- 36:02context into the intervention.
- 36:05So we wanted to ensure
- 36:06that we were doing that,
- 36:08but the question is how best to incorporate
- 36:13a deep structural approach into our work.
- 36:18We weren't sure exactly how to
- 36:21go about doing that and what we
- 36:25finally agreed on were the first
- 36:29four steps that are described here.
- 36:32We had activities.
- 36:33We had preliminary.
- 36:34Work that we did review of
- 36:36the existing literature,
- 36:38then we did some work on the generic
- 36:41intervention itself and what we did
- 36:44was a Delphi process and I'll say
- 36:46a little bit more about that later.
- 36:49What we did with it,
- 36:50and we developed then first draft
- 36:54of a culturally adapted version.
- 36:57Then we did a second round of the
- 37:01Delphi process and develop a second
- 37:04draft of the adapted version.
- 37:06And then we pilot tested the intervention.
- 37:09You'll see that you remember
- 37:11from our literature review,
- 37:13red is whether it incorporated
- 37:15existing research and blue is
- 37:17whether it involved experts and
- 37:19green is whether it involved
- 37:22the target or community groups.
- 37:24And you're probably noticing that
- 37:26there's no green on our procedures
- 37:30in the first stop of of our journey.
- 37:33Doctor Kolson knew that we needed to
- 37:37involve experts other than ourselves
- 37:39and I'm I should be putting expert
- 37:42in quotation marks because the
- 37:45experts that we reached out to were
- 37:48acada missions and practitioners.
- 37:50That's who we thought of as
- 37:52experts at that point.
- 37:54And you know,
- 37:55probably from your undergrad days
- 37:57about the Delphi that it's a controlled
- 38:00method for obtaining feedback.
- 38:02So what we did was to.
- 38:03Ask our experts.
- 38:05We we provided them with our
- 38:09intervention and we found some mod.
- 38:12Some other interventions that were
- 38:15developed for black men that had
- 38:18some of the same content as our
- 38:22interventions and we asked them to
- 38:24come to evaluate our intervention
- 38:28and the other interventions on
- 38:31appropriate language expressions.
- 38:34Whether the activities enhanced
- 38:36ethnic identity,
- 38:37whether it was consistent with the
- 38:40norms and knowledge of the target group,
- 38:42and whether it communicated
- 38:45an understanding of the social
- 38:47context surrounding the behavior.
- 38:50So,
- 38:51let's say one of our one of our
- 38:54modules was negotiating safer sex and.
- 38:59Support and and assume that that are
- 39:03rimas is the purple bar in the middle.
- 39:07In each of these and on either side
- 39:10are the are two other interventions
- 39:12that had similar content for
- 39:15working with with black men.
- 39:17If the experts told us that none of
- 39:22those were working very effectively
- 39:25for black men, we didn't get much help.
- 39:29From the other interventions on
- 39:32how to modify that intervention,
- 39:35'cause they were doing,
- 39:37they weren't doing any better
- 39:39than than Remus was.
- 39:40On the other hand,
- 39:42there might have been another module where
- 39:45all three were rated very positively,
- 39:48and in that case it was nice to see.
- 39:51But it told us that maybe we didn't
- 39:53even need to modify that particular
- 39:55activity because Remus was doing
- 39:57OK on the criteria that we were.
- 40:00Uhm, using for the evaluation,
- 40:02but let's look at the category 3 where Remus,
- 40:06which is in the center and the other
- 40:09blue were not rated very favorably,
- 40:11but the green,
- 40:13which was another intervention on
- 40:14the same with the same content,
- 40:17was rated very favorably that
- 40:19todat that gave us an idea,
- 40:21both that we needed to modify our
- 40:24intervention and some ideas about
- 40:26how we might modify it was not
- 40:29that we copied that intervention.
- 40:31That was rated more favorably,
- 40:34but it gave us some ideas about
- 40:37how we might modify.
- 40:39We did this in two rounds
- 40:41in the generic version, we,
- 40:43as I said,
- 40:44we were comparing rimas to of
- 40:46similar intervention modules,
- 40:49but in the second round they were just
- 40:53rating rimas on the same criteria
- 40:55that we had used in in round one,
- 40:59and this was useful for us
- 41:01because the relative ratings.
- 41:03Or telling us which activities that
- 41:06needed would benefit modification
- 41:08and giving us some ideas of
- 41:10sometimes giving us some ideas
- 41:12of what might be more effective.
- 41:15And I know I've gone
- 41:17through that pretty quickly,
- 41:18but we actually have an article
- 41:21where we talked in detail about
- 41:24the process for modifying Remus.
- 41:27If anybody's interested.
- 41:29We ended up with both.
- 41:32Surface and deep structural UM.
- 41:37Modifications and see that we added
- 41:40some cultural sessions that seem to
- 41:45speak to Neil female relationships
- 41:47in the communities in which the
- 41:51men were living and made some
- 41:53other deep structural changes.
- 41:56Next, we actually conducted a small trial.
- 42:00We went back to four sites in the
- 42:02night of Clinical Trials Network,
- 42:04conducted a small trial where we
- 42:07compared Remus, culturally adapted to.
- 42:11The generic greimas on UM.
- 42:16On risky sexual behaviors and
- 42:18our findings were positive quite
- 42:21positive at the three month follow
- 42:25follow up relative to participants
- 42:27in the generic version.
- 42:30Participants in Rimas culturally
- 42:33adapted were behaving differently
- 42:35with casual partners.
- 42:37They were engaging and less sex reporting.
- 42:40Fewer unprotected sexual occasions
- 42:42when they did engage in sex
- 42:45and they were more likely to.
- 42:47Report using condoms.
- 42:48At least 80% of their sexual
- 42:51occasions and they also had better
- 42:54attendance and once again you
- 42:56know gone through that had to
- 42:57go through that fairly quickly.
- 42:59But we actually wrote that study up
- 43:02in the American Journal of Public Health.
- 43:05So uhm,
- 43:06Dr Callsen presented our work at
- 43:09CIPD to an academic audience and
- 43:13the feedback was quite positive.
- 43:17He sent me to a community oriented
- 43:21conference and in a very diplomatic
- 43:25but straightforward way.
- 43:27They shared with us that they
- 43:30thought it was a big mistake that
- 43:33we had not included the community.
- 43:35In our cultural adaptation,
- 43:37and in fact I think that they were
- 43:40telling they they were very accurate.
- 43:43There was little community involvement
- 43:45and little decision making from
- 43:48the community in what we had done,
- 43:50and so we would argue that.
- 43:55Remus then on our continuum falls
- 43:58under investigator driven research.
- 44:00We said to ourselves,
- 44:02if we're ever culturally adapting again,
- 44:04we're going to involve the community,
- 44:07and we had the sex that takes me
- 44:09to the second stop of our journey,
- 44:11and we thought, well,
- 44:13how do we go about engaging the community?
- 44:17So we had the opportunity with
- 44:20the female counterpart of Rimas,
- 44:23which is called safer Sex Skill building.
- 44:26And so that was our first attempt
- 44:29really at community engagement and.
- 44:31And one thing we did know was that
- 44:34the Delphi process that we had
- 44:37used for Remus was probably not the
- 44:39best way to approach the community,
- 44:42at least not the way we use
- 44:45the Delphi process.
- 44:46So then it was well,
- 44:48if we're not going to use a Delphi process,
- 44:50what should we use?
- 44:52How do we?
- 44:54Involve the community and about
- 44:57that time we were introduced to some
- 44:59work by Gina Wingood at Columbia.
- 45:02Now she's at Columbia.
- 45:04She did.
- 45:05She developed a model called adaptive
- 45:07and in her model called adapted.
- 45:10There's several steps,
- 45:11but one step is theater,
- 45:14something that she calls theater
- 45:16testing and and in theater testing.
- 45:19Your essentially asking the target group.
- 45:22These are group interventions.
- 45:25Now you're asking the target group to
- 45:28participate in a mock demonstration of
- 45:31the intervention and give feedback,
- 45:34and so we decided that we would add
- 45:37this theater testing to our second
- 45:39round and in the theater testing.
- 45:41Then we recruited members of Target
- 45:44Group to volunteer to participate
- 45:46in the mock demonstration.
- 45:49We had the experts again,
- 45:51but now they were observers of
- 45:54the mock demonstration.
- 45:55And we did it in and in the second
- 45:58step up theater testing everybody.
- 46:01The target group members and the
- 46:05the experts would sit together and
- 46:08critique the modules of the intervention
- 46:11as a way of helping us to modify.
- 46:15And we did this in two rounds as well.
- 46:17First on the generic version and then
- 46:21second on the first adapted version,
- 46:26and.
- 46:26And based on the first and their
- 46:28response to the first adapted version,
- 46:31we came up with a version that
- 46:34we felt pretty good about,
- 46:36and that version added structural changes,
- 46:41but also our surface changes,
- 46:43but also added some deep
- 46:46structural modifications as well.
- 46:48The women told us that we should
- 46:50include something on domestic violence
- 46:52because that was an issue with the
- 46:55target group that we were serving.
- 46:57They told us that we should talk
- 47:00more about gender roles and that
- 47:03empowerment was an issue for black
- 47:06substance using women and that we
- 47:09should include some activities
- 47:11on empowerment.
- 47:12So we had pilot data on that group
- 47:17where we compared SSSB culturally
- 47:20adapted to the generic and once
- 47:23again the findings we haven't.
- 47:25We have an article not.
- 47:27Quite ready to go out yet,
- 47:29but the finding suggests that SSSB
- 47:32culturally adapted though the
- 47:34women in that were more likely to
- 47:37report condom use the last time
- 47:39they had vaginal sex
- 47:41than the women in the generic version.
- 47:43And then we pulled out just
- 47:46the women who at baseline,
- 47:49denied that they had used condom use.
- 47:53In their last vaginal.
- 47:56A sexual experience and for that
- 48:00group to DSSSB culturally adapted,
- 48:04were more likely to report condom
- 48:08use than the generic version.
- 48:10So where are we now on the continuum?
- 48:14We think it occurs in a
- 48:17community setting the need,
- 48:19but the need didn't come from the community
- 48:23the community was participating, but.
- 48:27A minimally and limp.
- 48:28Then the community had limited role in
- 48:32the implementation of the research,
- 48:35and so here for for the
- 48:39SSSB culturally adapted,
- 48:41we believe that that one falls
- 48:46under community based research
- 48:48that we've achieved community
- 48:50based research with that.
- 48:52So we're moving in the right direction.
- 48:54But we're we're not satisfied with.
- 48:57With where we were.
- 48:58We felt like something was still
- 49:01missing and what was missing for us
- 49:03was that we wanted more community
- 49:06involvement in the implementation
- 49:08and in the decision making.
- 49:10And that brings us to our the
- 49:14third stop of our journey where
- 49:17we had the opportunity to modify
- 49:20SSSB into a team version.
- 49:22And when the teen version,
- 49:24we weren't so much interested
- 49:26anymore about substance use,
- 49:28but risky sexual behaviors among
- 49:31black teen girls are the aim of our
- 49:35intervention was to reduce risky sexual
- 49:38behaviors among girls living in low
- 49:42income public housing communities
- 49:45where they are often exposed to
- 49:48risky sex at two often exposed to.
- 49:52Risky sex at at an early age,
- 49:55so here we recruited community partners
- 49:59to our research team and so we created
- 50:04an academic community research team.
- 50:07The academics were faculty and
- 50:09students like you might expect,
- 50:12but for the community partners
- 50:13we had some residents we had the
- 50:16President of the Residents Council.
- 50:17We had teen girls who were a little older
- 50:20than the girls who were our target group.
- 50:23They were already mothers,
- 50:24but they were residents in the community.
- 50:28Then we had a social worker
- 50:30and the director of a social
- 50:33service agency and together.
- 50:35Then we created this academic
- 50:38community research team.
- 50:41A picture of our research team in
- 50:44our in our community and if if you
- 50:49remember that green suggests that we're
- 50:52involving the target or the Community group,
- 50:56and here we were involving the
- 50:59target group and the Community
- 51:02Group in the recruitment.
- 51:05Well, first we recruited community
- 51:07representatives to the team,
- 51:09but then as a preliminary
- 51:11step we trained each other.
- 51:13They trained us on how to work
- 51:15more effectively in the community.
- 51:17They said,
- 51:18for example,
- 51:18don't come in here using that term
- 51:21intervention because people have
- 51:22seen that on TV and they'll think
- 51:24that you're trying to change them.
- 51:27Use program instead of intervention
- 51:29and other things like that that they
- 51:33were training us on their community.
- 51:35And of course we had to provide some
- 51:38training on on the research design itself.
- 51:42Then we.
- 51:44In in for the generic version,
- 51:46once again we did the theater testing
- 51:50and they were quite involved in
- 51:52conducting the theater. Testing.
- 51:54This time they were the community members
- 51:57were the experts who were observing.
- 52:00We recruited teen girls to participate in
- 52:03a mock demonstration and the community
- 52:06members of the research team were
- 52:09experts at that point and then together
- 52:12we developed a first draft of the team.
- 52:15Version and then once we had a a first
- 52:19draft of the of the of the adapted version.
- 52:23The community members said
- 52:25they thought that they had.
- 52:27They knew the intervention well enough
- 52:29that they actually carried out.
- 52:32They actually contributed to
- 52:34facilitating the intervention,
- 52:36and when we did the adapted version,
- 52:40they of course helped would recruitment
- 52:42and they were they were they are
- 52:44expert observers for the second round.
- 52:46When we were doing a mock demonstration
- 52:49of the adapted version and then
- 52:52afterwards they gave us feedback.
- 52:54To help us.
- 52:56Prepare the the the next version of it.
- 53:00We could.
- 53:01They participated in the pilot
- 53:03test at the pilot test stage.
- 53:05They meaning the community members
- 53:07of the research team and we actually
- 53:10ended up with a publication that
- 53:12was Co authored by the academic and
- 53:15the Community research team members.
- 53:17And once again we had both surface and
- 53:22deep structural changes to the intervention.
- 53:24There were things that
- 53:26just weren't appropriate.
- 53:2714 girls that we took out for the
- 53:30team for the teen version that was
- 53:32part of our deep structural but there
- 53:35were things that we added to like the
- 53:38Community and the literature said
- 53:40that sometimes young girls are need
- 53:43more information on what behaviors
- 53:47actually constitute physical abuse.
- 53:49So include something in there
- 53:52about physical physical abuse and
- 53:56domestic violence.
- 53:57We only have some preliminary
- 53:59findings on this.
- 54:01Our third stop of our journey,
- 54:03but our preliminary findings are
- 54:07promising that our girls from and it's
- 54:11only pre post at this at this stage,
- 54:14but they're reporting improvement on
- 54:17their condom use skills on a condom
- 54:20use skills, checklist and more HIV.
- 54:25A better scores on an HIV knowledge scale.
- 54:29So where are we now? On our continuum?
- 54:33We believe if you look at the green
- 54:36and and the role that says CBPR,
- 54:39the community had some decision
- 54:41making power as being members of
- 54:44the research team and they were
- 54:47somewhat involved.
- 54:47They were involved in the
- 54:50implementation of the research process,
- 54:52so we believe that we are approaching.
- 54:57Can't say that we're actually
- 54:58there that we meet.
- 54:59The full criteria,
- 55:01but that we have approached community
- 55:04based participatory research in the
- 55:06team project and just want to say
- 55:08that if you're doing this kind of work,
- 55:11you can't just show up and say,
- 55:12join our research team.
- 55:14We had to have an ongoing
- 55:16relationship with this community.
- 55:18You see,
- 55:19we had a coat drive or women's
- 55:21retreat voter registration,
- 55:22so we had to have a presence in
- 55:25the Community and that's one of
- 55:28the issues that need to be clear
- 55:30about if you're doing.
- 55:32Community engaged
- 55:34research. I'll talk maybe during the
- 55:36question and answer about the next steps,
- 55:39but I just want to move to that.
- 55:42We see that there were lots of
- 55:45advantages to community collaboration.
- 55:50We believe that, uh,
- 55:52we were strengthening capacity
- 55:53building in the Community community,
- 55:56empowerment that the Community would be
- 56:02more empowered to do studies and they have
- 56:06done a some work on their own without us.
- 56:10It would contribute to the sustainability
- 56:12of the intervention if we had community
- 56:15collaboration and so that you remember
- 56:18that all the way on the right.
- 56:20On our continuum is community driven,
- 56:23and that sustainability allows them to do
- 56:26the work after we're no longer around.
- 56:30So we think that community collaboration
- 56:34increases sustainable sustainability
- 56:37and also perhaps most importantly,
- 56:39the intervention itself might be
- 56:41more effective if we involve the
- 56:43target group in the Community and it,
- 56:45but that's not to say that we
- 56:48didn't face some challenges.
- 56:50We faced a number of challenges.
- 56:53One is that in CBPR,
- 56:56one of the things is that you'd
- 56:58like to have a balance of power.
- 57:01But there was an imbalance.
- 57:02Inherent imbalance of power in
- 57:05our relationships and the money
- 57:07had a lot to do with that.
- 57:09The community members of the
- 57:11research team were paid,
- 57:13but we we had the university
- 57:15required us to be in charge of
- 57:18payroll and and access to the funds.
- 57:20Uh,
- 57:21and so that created somewhat of an imbalance,
- 57:24and we thought that if we were
- 57:25to do it again,
- 57:26maybe we'd house some of the funding
- 57:28in a Community organization to take
- 57:31away that part of the imbalance.
- 57:33But the educational differences created
- 57:36was an inherent power differential as well.
- 57:40A second challenge was different
- 57:44levels of responsibility that
- 57:46the university looked to us,
- 57:49the research, the ACADA missions.
- 57:52To make sure that certain
- 57:55requirements were met,
- 57:57the sorry I missed that.
- 57:59So so the so the buck the buck
- 58:02stopped with us in in many cases
- 58:06and so that was a challenge for us,
- 58:10whereas the community members
- 58:12oftentimes had other priorities that
- 58:15they were that they were facing and
- 58:18not always able to give to prioritize.
- 58:22Their work with us.
- 58:24The IRB procedures we had to work
- 58:26with some the ethics training.
- 58:28Sometimes doing the city training is
- 58:31is intimidating to community members.
- 58:34Thankfully,
- 58:34our IRB let us modify that some in our
- 58:39group was not that easily intimidated,
- 58:41but that can be intimidating.
- 58:44Once we had IRB approval,
- 58:46as you know,
- 58:47there's inflexibility in the procedures.
- 58:49So if if the community members
- 58:52wanted to suggest.
- 58:54Made some really good suggestions.
- 58:56We couldn't always do it because
- 58:58it would delay our procedures to go
- 59:01back our study to go back to the IRB
- 59:04and also privacy concerns because
- 59:07the IRB expects that what's said
- 59:09in the group stays in the group,
- 59:11but we had less control over that
- 59:14with our community members.
- 59:15A fourth challenge was increasing the
- 59:18utility of the feedback from Target
- 59:21Group participants even though we asked for.
- 59:24Oral and written feedback.
- 59:26Sometimes the feedback wasn't that relevant.
- 59:30Wasn't that useful to us?
- 59:32For example, the teen girl said,
- 59:34oh, this is good for us,
- 59:36but you need to do something for the boys.
- 59:38But that was outside the
- 59:40scope of of our study.
- 59:41So we thought about if we did it again,
- 59:43maybe we'd have a focus group where
- 59:46we could structure the feedback more.
- 59:48And as I suggested before,
- 59:50the unique life circumstances
- 59:52of the Community members.
- 59:54Was a sometimes a challenge that further
- 59:57women in substance use treatment.
- 59:59Sometimes they were being discharged from
- 01:00:02treatment and from treatment and trying
- 01:00:05to establish their new living situations,
- 01:00:07reunite with their families and so those were
- 01:00:12competing responsibilities and further girls.
- 01:00:15We had young mothers as I said
- 01:00:18on our on our research team.
- 01:00:21If they couldn't find daycare
- 01:00:23than then they couldn't come so.
- 01:00:25Uh, we had to work through a lot of those.
- 01:00:28So just as I start to wind down,
- 01:00:31I just want to show the evolution
- 01:00:33of our model that we started out.
- 01:00:35Remember,
- 01:00:36we started out with just incorporating
- 01:00:39existing research and using academic
- 01:00:43experts in the Delphi process.
- 01:00:46Then we moved to involving the community
- 01:00:50some by using the theater testing.
- 01:00:53But the but even then.
- 01:00:56The target group had limited involvement in
- 01:01:02decision making and finally we moved to.
- 01:01:06Our third model with the teen girls,
- 01:01:08which we developed as a model that
- 01:01:12we're calling community collaborative
- 01:01:14cultural adaptation and you can
- 01:01:16see from the green which represents
- 01:01:19Target group involvement,
- 01:01:21that the we moved to where the target
- 01:01:23group and the Community was involved
- 01:01:26throughout the course of the project,
- 01:01:28so that that's kind of the evolution
- 01:01:31of of of our work from limited
- 01:01:34to much more community.
- 01:01:36Involvement and we actually
- 01:01:39then with the Community,
- 01:01:41published an article on our model called
- 01:01:45Community Collaborative Cultural adaptation,
- 01:01:48and again,
- 01:01:49I've gone through this real quickly.
- 01:01:51But we've actually published an
- 01:01:54article that kind of describes in
- 01:01:57J set that describes the evolution
- 01:01:59from limited community involvement.
- 01:02:02Too much more Community involvement,
- 01:02:06so I'll close just by saying and.
- 01:02:08And Doctor Hany mentioned this that
- 01:02:11we're doing some work in the CTN
- 01:02:14that is related to this project.
- 01:02:18We're doing a secondary data analysis on
- 01:02:21nine studies that were conducted in the CTN.
- 01:02:25Looking at the comparative efficacy
- 01:02:28for for black substance users and
- 01:02:31we hope to learn which entered which
- 01:02:34interventions work best and for whom and.
- 01:02:38Which interventions would benefit
- 01:02:40from cultural adaptation?
- 01:02:42And I wanted to mention this because
- 01:02:44three of our three members of our
- 01:02:47research team are actually members of
- 01:02:49the Yale can community, Dr Haney, Dr.
- 01:02:53Ashley Jackson, and Doctor Ayana, Jordan.
- 01:02:57So we look forward to doing that.
- 01:03:00We're just at the initial stages
- 01:03:02of that study,
- 01:03:04and so my summary is that generic versions.
- 01:03:09Of evidence based interventions
- 01:03:11may not be as effective.
- 01:03:14Across all target groups,
- 01:03:17cultural adaptation may improve
- 01:03:21intervention effectiveness,
- 01:03:22including the community may increase
- 01:03:25intervention effectiveness and
- 01:03:27sustainability of the intervention,
- 01:03:29and finally, that multiple models of
- 01:03:34Community involvement are available.
- 01:03:36So I have my references,
- 01:03:38but I'll stop there and thank
- 01:03:40you for your attention and I
- 01:03:42hope we have a few minutes left.
- 01:03:44Or some discussion.
- 01:03:48Yes, we do. Thank you so much.
- 01:03:49Doctor burlew.
- 01:03:50That was an amazing presentation.
- 01:03:52It really outlined in ways that I think
- 01:03:56we can understand and value the process
- 01:03:59of involving the Community and the
- 01:04:02different levels at which that could occur.
- 01:04:05And I think what you've done is
- 01:04:06something we can all aspire to.
- 01:04:08And it seems like it's been a heroic effort,
- 01:04:10but one that's got a big payoff.
- 01:04:12So thank you so much, you're welcome.
- 01:04:16So are there others that might
- 01:04:18have questions or comments
- 01:04:19that they'd like to make?
- 01:04:25I have a question, I am I,
- 01:04:28I'm a statistician,
- 01:04:28but in in the the other piece of my
- 01:04:31life I'm an activist and we have a
- 01:04:33saying that it's an old African proverb.
- 01:04:37If you want to go fast, go alone.
- 01:04:39If you want to go far,
- 01:04:40go together and I think that
- 01:04:42really fits with community based
- 01:04:44participatory research as well that
- 01:04:46it is really important to include
- 01:04:49people and even in the best of worlds,
- 01:04:51I think you know an academic
- 01:04:53setting is a very.
- 01:04:54Difficult place to include that,
- 01:04:56especially because it's going
- 01:04:58to impede productivity.
- 01:04:59It does take a lot longer come and
- 01:05:02and time is money and so how does how
- 01:05:06does that fit into your academic path?
- 01:05:10Yes,
- 01:05:11and that is an excellent point that for
- 01:05:15early career professionals, I'm not sure
- 01:05:19that they have the time to do these.
- 01:05:24Interventions that take a while to gain trust
- 01:05:27in the community and then to carry out the
- 01:05:31intervention and to collect follow up data.
- 01:05:34My advice to them is to join research
- 01:05:37teams as you were suggesting, but that
- 01:05:41we have learned that we could do we can.
- 01:05:45We can write up quite a bit on the baseline
- 01:05:50data and so they may need to design ways.
- 01:05:55Of developing the baseline data so
- 01:05:59they can get some publications out of
- 01:06:03that and not have to wait three or four
- 01:06:07years for the project to be finished.
- 01:06:09But I welcome any other comments on that,
- 01:06:11but that's a very good point of of how
- 01:06:15hard it is to do this kind of work in
- 01:06:18an academic setting where you're facing
- 01:06:21something like tenure and promotion.
- 01:06:34I think your comment about being involved
- 01:06:37in a team can go a long way because
- 01:06:40people sometimes need to be writing data,
- 01:06:43and I think the CTN CTN is a good example.
- 01:06:47Dr. Burlew about the work you've got guys
- 01:06:49have done doing secondary data analysis of
- 01:06:52existing clinical trials for productivity,
- 01:06:54while people gain, you know,
- 01:06:57the trust of the community and start
- 01:07:00established their own research agenda.
- 01:07:05Stephanie, there is a
- 01:07:07question in chat, right?
- 01:07:11I can't see the chat.
- 01:07:15You wanna read it out?
- 01:07:15I don't stand sure it's from
- 01:07:18Dan Shutler and when you
- 01:07:20have opposed suggestions from
- 01:07:22the community and research,
- 01:07:23how did you go about coming to a consensus,
- 01:07:27especially considering
- 01:07:28the power dynamics, yeah?
- 01:07:32Well, and it's not just the academic.
- 01:07:36Members of the team,
- 01:07:39but there's the IRB and there
- 01:07:42is and and and the community.
- 01:07:45I wish I could say on a case by case basis.
- 01:07:48We tried to to work it out,
- 01:07:50but I remember one project that different
- 01:07:53project that we were doing and we
- 01:07:57were randomly assigning teams to the
- 01:08:00treatment group or to the comparison
- 01:08:02group and the Community members had
- 01:08:05certain people that they had invited.
- 01:08:09To the meeting and they really invited
- 01:08:14them by telling them how good the
- 01:08:17intervention was going to be for their
- 01:08:20kids and then their kids got excited.
- 01:08:22Got a sign to the comparison group and
- 01:08:27they certainly wanted to just, you know,
- 01:08:31move those kids over to the treatment group,
- 01:08:34but we couldn't do that.
- 01:08:36And so in the end, that's where.
- 01:08:39The buck had to stop with
- 01:08:43the academic requirements,
- 01:08:47but I on the other hand,
- 01:08:50I think if we wait and present the
- 01:08:54project to the IRB after the Community
- 01:08:57members have had a chance to weigh in,
- 01:09:01then we might be able to include more
- 01:09:05of their suggestions than if we.
- 01:09:09That then,
- 01:09:10if it already has IRB approval when
- 01:09:13we recruit them to the research team,
- 01:09:16so I welcome other suggestions
- 01:09:19there 'cause we could use that
- 01:09:21those answers as well,
- 01:09:23but that's the best I can do on that.
- 01:09:28We have another question.
- 01:09:29Can you speak to how community
- 01:09:31members are compensated for
- 01:09:33their work in these programs?
- 01:09:35Are they paid for their time?
- 01:09:36Is there a specific process for
- 01:09:38securing funding for this? Yes.
- 01:09:42We, as academic members,
- 01:09:44were not compensated for
- 01:09:46our time on these projects,
- 01:09:49but both groups of community
- 01:09:52members were compensated.
- 01:09:54And when I say both groups,
- 01:09:55certainly the target group members each
- 01:09:59time they came to group they received.
- 01:10:03I think it was $2025 gift certificates.
- 01:10:09For the members of the research
- 01:10:12team who were community members,
- 01:10:14they were compensated as well for their
- 01:10:17participation on the project and I
- 01:10:20didn't get a chance to talk about it.
- 01:10:23But that was an issue as well,
- 01:10:25because the university payroll system
- 01:10:29may not meet their expectations.
- 01:10:32The worst example I have is
- 01:10:35that there was one member of the
- 01:10:37research team from the community.
- 01:10:40Who was depending on her funding to
- 01:10:45have her daughter's birthday party and
- 01:10:49the university didn't come through
- 01:10:52with the funding as she expected the
- 01:10:56the university was operating on a
- 01:10:59different schedule and so she ended
- 01:11:02up canceling the birthday party
- 01:11:03even though we offered the launder,
- 01:11:05the money or pay for it or whatever.
- 01:11:07She ended up canceling so that that wasn't.
- 01:11:10Issue for us and that was one reason
- 01:11:15I said that maybe placing some of
- 01:11:18the funding in a Community group in
- 01:11:22the the funding in the Community and
- 01:11:25a Community organization so that
- 01:11:27they're not as dependent on the
- 01:11:29university payroll system which you
- 01:11:32know sometimes people are getting
- 01:11:33paid once a month and that doesn't
- 01:11:36always work if you have low income
- 01:11:38community members.
- 01:11:41Thank you we have another question.
- 01:11:43First I want to just mention there
- 01:11:46several comments in the chat making
- 01:11:48you for an inspirational talk.
- 01:11:50My dog also appreciates it, I apologize.
- 01:11:54But one of the questions in the chat
- 01:11:56was can you please say more about
- 01:11:58how the educational differences
- 01:11:59between the academics and community
- 01:12:01members created the power imbalance
- 01:12:03given the specific expertise
- 01:12:04required for these different roles?
- 01:12:06Yeah. Uhm?
- 01:12:11What I would say is that they tended to see
- 01:12:15us as the experts in what we were doing.
- 01:12:20You come in and at least at first
- 01:12:24they're calling me Doctor Burlew.
- 01:12:26And so I make a suggestion,
- 01:12:29and they make a suggestion.
- 01:12:31But other people think, well, she's she.
- 01:12:34Doctor Blue has been doing this for years.
- 01:12:37She must know more about how
- 01:12:39to do this than we do. Uhm?
- 01:12:43Overtime that got a little better.
- 01:12:47I would welcome suggestions from this group
- 01:12:51on ways of of addressing that imbalance,
- 01:12:56but it was clearly there that since
- 01:13:00we were college professors and they
- 01:13:04were residents in low income housing,
- 01:13:08they tended to think that we knew
- 01:13:11more about what we were doing.
- 01:13:13Then they did.
- 01:13:23I do not see any additional.
- 01:13:27Questions and chat, or in a hands up.
- 01:13:32Is it possible for me to get a
- 01:13:34copy of the chat afterwards?
- 01:13:36I didn't get a chance to look at it.
- 01:13:38Will believe the
- 01:13:40grand rounds up so when the everybody
- 01:13:43starts to leave you are more
- 01:13:45than welcome to look at the chat.
- 01:13:47OK, alright thank you.
- 01:13:52Well, if there are no more questions,
- 01:13:53we really want to thank you for this.
- 01:13:56Your excellent presentation.
- 01:13:58It's inspiring and I hope it will
- 01:14:01help us as a department incorporate
- 01:14:03these practices into our own work,
- 01:14:06so thank you again for
- 01:14:08presenting to us today. Welcome.
- 01:14:11Thank you for having me.