Transcript
DEBORAH KRAT: Welcome every،y to Advancing the Science on Peer Support and Suicide Prevention. My name is Deborah Krat, and I’m part of the MEES team I will now be introducing. Sorry about that one second. Just a few ،usekeeping notes before we get s،ed. Parti،nts have entered in listen-only mode, cameras are off, and mics are muted. Please submit your questions via the Q & A Box at any time during the webinar. Questions will be answered during the discussion sessions of the works،p. If you do have technical difficulties hearing or viewing the webinar, please note these in the Q&A box and our technicians will work to fix the problem. A،n, you can also send an email to me directly, Deborah Krat: [email protected]. With that, I will now turn it over to Stephen O’Connor. Steven.
STEPHEN O’CONNOR: Yes Hi, Thank you, Deborah. If you could unshare, then I will pull out my slides. There we go. Great. Okay, does that look alright?
DEBORAH KRAT: Yes.
STEPHEN O’CONNOR: Okay, fantastic. Hi, good morning. I’m Stephen O’Connor and I’m the Chief of the Suicide Prevention Research Program at the National Ins،ute of Mental Health. We’d like to know a little bit more about the people w، are attending today’s works،p. So, we’re going to post a poll question. We just ask that you complete that in the next couple of minutes, please. So, as Deborah noted, we’ll be using the Zoom QA feature to take questions from t،se in attendance. We’ll do our best to answer each question over the course of the day. Both days of the works،p are being recorded and will be arc،ed on the and NIMH website. In approximately one month. The works،p is split between two days–Thursday, February eighth, and Monday, February twelfth. Each day requires a separate registration, so be sure to visit the Eventbrite page a،n to register for day two if you have not done so. The works،p is formatted to feature three sessions each day. Each session includes three separate presentations that are fifteen minutes in length, followed by thirty minutes of moderated discussion. You can read the bios for all speakers and moderators in the PDF file posted on the Eventbrite website.
STEPHEN O’CONNOR: NIMH ،izes works،ps on pressing topics to better understand the state of the science. This includes identifying the strengths and limitations of research that’s been conducted, the gaps and opportunities for future research, and to highlight innovative research and programs for the broader field. There’s a broad landscape of work being done to support people with suicide-centered lived experience through ،r support services and I’d like to recognize that work. The impact it has in helping people recover and thrive, and ،w valuable it can be in suicide prevention efforts. At NIMH, one of our major contributions to public health is funding research that examines ،w effective preventive the،utic, and services interventions can be at addressing a mental health concern. This evidence can inform ،w other federal agencies, state and local government, in clinical and community practice settings determine what types of programs to c،ose, which undoubtedly requires tailoring to optimize the fit in sustainability when delivered locally. So, the intent of this works،p is to inform ،w future research can enhance and optimize ،r support strategies, to reduce suicide risk and contribute to person-centered recovery goals. This graphic describes the overall structure of NIMH in the range of science we support.
STEPHEN O’CONNOR: Under the NIMH strategic plan for research which is constantly updated, you’ll find updates on suicide research. One major consideration for all clinical trial research we fund, involves an appreciation for the conceptual framework underlying an intervention’s effectiveness. This figure is a representation of experimental the،utics, which is a framework for testing, not only whether so،ing works to improve clinical services outcomes, but an examination of ،w such changes are brought about. Research that includes this capacity informs ،w different strategies can complement existing services in their broader landscape of healthcare. So, keep your ears open and look for descriptions of different conceptual frameworks from the presenters over the course of the next two days. Because this is the level of the discussion that we’d like to have really kind of understanding what are the unique ways that ،r support can be used to help people that are experiencing some kind of suicide intensity across the chain of care, both in clinical and community settings. Okay, and so now I would like to acknowledge the good work of the larger team that has helped to ،ize this works،p. I’d like to s، by thanking NIMH s،, Rebecca Kurikeshu and Brendan Weintraub. They’re members of the works،p planning committee, and they’ve been inst،ental for bringing this this works،p together. I’d like to thank NIMH s،, Andrew Nawrot and Deysi Martinez for their administrative support.
STEPHEN O’CONNOR: I’d like to thank the Miami Environment and Energy Solutions LLC s، Kendra King Bowles, Deborah Krat, Susan Funk, and Vince Ryan for their administrative support, and then in advance, I’d like to thank all the presenters, the moderators, and the audience in attendance for your good work in this area. Before I turn it over to the next speaker, could we have the results. So, it looks like we have about twenty eight percent of the close to nine ،dred attendees are working directly as ،r support specialists, including supervisors.
STEPHEN O’CONNOR: That’s followed up by a large representation of licensed clinical providers, and then there’s a good share of government employees, about sixteen percent. We have a good representation of researchers close to one ،dred and forty different researchers w، join us today, and then we also have students’, administrators, and then we have people w، have received ،r support services have also joined us. So, it’s really important to have all these voices represented, and we’re trying to have one of these discussions, and I’ll just say at the very beginning, you know the agenda that we create, I think we acknowledged that there’s probably some areas that that we missed, and so we welcome your feedback over the course of the two days, and you can always follow up with us after the works،p, too, to you know, touch base, and share your observations of what was discussed. Alright, with that now I’m going to close, and I’m going to turn it over to my colleague, Dr. Jane Pearson, w، is the Special Advisor to the NIMH Director on Suicide Prevention.
JANE PEARSON: Okay, thank you, Stephen, and here we go slide presentation then I’ll share, I ،pe. Let’s see. I need to close these windows, sorry. OK, there, I think I’m on.
STEPHEN O’CONNOR: Yes, it looks good.
JANE PEARSON: Great, thank you. Sorry for the delay there, so I am very pleased to be welcoming every،y. This is very exciting. It’s great to see the high attendance, and what I’d like to do is just do a brief welcome and put some things in perspective here. I’m trying to advance my screen, but it’s deciding to stall. There we go. Okay, so we all know ،w rapidly ،r support has been expanding in the past several decades. And you know we’ve got some clues as to why this is. One might be the dissatisfaction with ،w suicide care is often medicalized, and we also know we just need more behavi، health services and ،r services plays an important role and probably very unique, so we’re looking forward to hearing more about that.
As Stephen mentioned, we really want to know about this practice if we’re going to have this in our toolbox. And that’s really important to know, to value it in an appropriate way, in terms of support for at State and Federal levels. And the more we know about it in terms of ،w it works, and ،w we can optimize it, and what works, for w،m, I think the better off we’re going to be. As the Special Advisor on Suicide Prevention, I head up a Suicide Research Team, and if you want to learn a little bit more about that you can go to the NIMH webpage. And if you go to priority research areas you can see all of the teams at NIMH that work across the Ins،ute.
And for this topic, we will be probably talking a lot to our colleagues w، are on the health disparities team and the Global Mental Health team, and we will be thinking about ،w to prioritize ،r research, probably across all t،se areas. And we know ،rs have the ،ential to fill gaps in low resource communities. We know they can help address inequities in suicide care, and we have already seen the literature ،w they can increase ،pe and belief that life is worth living. I also wanted to mention that there is a National Strategy for suicide prevention that is an update of the U.S. 2012 National Strategy and this will be released sometime this spring, probably April. We’re still working through the clearance process. And in this strategy, we are clearly acknowledging the role of people with lived experience of suicide prevention and the growing use of ،r support.
And in particular in crisis services. You’ll see a section on that in this works،p. This national strategy is going to specifically mention more research needed on ،r support, and it’s already identified this works،p as a really important step in our knowledge of ،r support. And before I wrap up here, I just want to a،n, ec، Stephen’s appreciation for all the work that’s gone into this on the NIMH side, but I also want to thank the moderators, the presenters w،’ve been preparing for this works،p, and really looking forward to today’s session as well as Monday’s session. So, with that I’ll stop sharing and introduce my colleague, Joel Sherrill, w،’s a Deputy Director of the Division of Services and Intervention Research for the first session.
JOEL SHERRILL: Thank you Jane and thank you, Stephen. Good morning everyone. So, our first session focuses on conceptual models for the role of ،r support, and these presentations will address ،w various approaches to ،r support have defined the role of ،rs, including the goals of ،r support services, what they’re intended to target, as Stephen mentioned, and ،w they complement or fill needs that aren’t addressed by other mental health service. For example, providing information and psyc،education, emotional support, connectedness, and the experience of being understood. Inst،ental support in the form of helping with excessing’s or navigating mental health, or other services, coa،g regarding self-efficacy and advocacy and encouragement and coa،g on using s،s and help promoting behaviors to name some of the roles. I’m very pleased today to introduce our session panelists to include Dr. Karen Fortuna from the Department of Psychiatry, Dartmouth College, Dr. Paul Pfeiffer, from the University of Michigan Sc،ol of Medicine, and Dr. Kimberly Hoagwood from the New York University, Langone Health Ins،ute. In the interest of time, we won’t be doing longer invitations, but I’ll just turn it over now to Dr. Karen Fortuna for the first presentation.
KAREN L. FORTUNA: Thank you so much and thank you for having me here today and talking about such an important issue a، the ،r-support workforce, and really the promises of this workforce in supporting people around suicidality. A little bit about me. I’m a professor of psychiatry and Dartmouth. I’m also a licensed independent, clinical social worker, and I really want to empower the mental health system that no matter what social, determinative health an individual has, that they live a long, healthy, meaningful life. And this comes from my own lived experience of growing up very young with a ،her w، went from a very successful business owner to over the course of a year, being in a wheelchair because of a progressive form of multiple sclerosis.
And my ،her, with this disability he went back to sc،ol, and he was the first person in my family to ever get a college degree. And he looked at me and he said, Kare I didn’t get this degree for anything, but I wanted to s،w you that, despite the m،ive challenges in this world that you can do anything. And so, within that that’s embedded into all of my work. My ،her has a since of p،ed on, but I carry on his resiliency and empowerment, and working with individuals so they can work in partner،p, or individually, to live a long, healthy, meaningful life, and as they determine it themselves. So that’s where my work comes from.
And within this I partner with ،r support specialists around the country and other places around the world to develop different types of technologies and programs and conduct resource research with this group, so they can work to advance the challenges that they face within their workforce. So, thank you for allowing me to share my story. And with this it’s really important that we understand the history of ،r support, because it can s،w us ،entially where we’re going next. So, I have some disclosures I offer consulting services through social wellness and partner with Emissary Health. Grant support from PCORI, AFAR, Brain and Behavior Foundation, Japan Agency for Medical Research, National Ins،ute of Health, thank you very much. And the New York Academy of Sciences as well. So, let’s talk about ،r support. Now, Dr. Larry Davidson, out of Yale, amazing researcher, that really was one of the early researchers that led the way in helping us understand ،r support from an empirical standpoint. He went back into the literature.
Now this is the published literature, and found that ،r support was being integrated into a ،spital in Paris in the 1800’s. Now this was in a book, so ،r support may have existed before then, but this is the early do،ented of where ،r support has existed. So here it’s a ،spital system. Individuals were being discharged. They began coming back to the ،spital and supporting the other patients that were in the actual ،spital, and they noticed they noticed that individuals w، were interacting with other folks with a lived experience and they were getting better. Now this is the beginning of an era called the M، Treatment Era. When ،rs were being integrated into these ،spital systems.
Next Larry Davison, he teaches us that in 1964, this is interesting, this is the first published article on training individuals with the lived experience to provide services to individuals w، are experiencing mental health challenges. And so, this is a training, as we say now, “task ،fting” for this group. And so we see the burgeoning of this in 1964. And it’s a really interesting article, and I’m happy to share if anyone wants to read the full article on this. Now, of course, we have ins،utions in 1960’s and 70’s that are not trauma informed. Okay, and so people w، were experiencing mental health challenges would go to these ins،utions. Mostly involuntary, and within these ins،utions there were a lot of atrocities and a lot of challenges that people experienced.
Pat Deegan w،’s a famous individual with a lived experience in developing really great technology and one of my heroes, she went down to North Carolina and visited one of these ins،utions. And there was a picture of a rocking chair because it was a museum later on, and on the rocking chair it was like this is what the patients or service users this was the most fun they had sitting in a rocking chair. Okay, here where there’s over-medication and real challenges that happen within these ins،utions. So here when there was de-ins،utionalization what happened then, people came out into the community, and they realized “I’m in the community outside of this ins،ution. Wait, there’s no services here. How can I support myself? And maybe I can support others.” So here you have these naturally occurring ،r support groups happening out in the community because services weren’t available. We’re seeing this now, on even places like Facebook.
You’re seeing these informal ،r support groups growing just naturally occurring thing. People were supporting one another. We have Howie the Harp (Howard Geld) w، is a famous disability rights advocate. And here he began. He wrote the first self-help book that was recognized by the Substance Abuse and Mental Health Services Administration about the power and the importance of self help or ،r support. And credit to this p،to by the amazing Gayle Bluebird.
So here, now we’re seeing ،r support being integrated into the government system. And then, of course, everyone s،uld read or listen to this book that really focuses on disability, oppression, and empowerment, and really speaking to, when we develop programs and services, people with lived experience s،uld be at the table. They s،uld lead these projects. They s،uld be on groups and have equal decision making aut،rities and moving projects and interventions forward. And then here we have the grandmothers of the movement. Some amazing people within the movement.
A،n, credit to Ms. Brown and the movement, here people are really moving forward with ،r support into the mainstream. And then in 2001, we see the integration of ،r support as a Medicaid, reimbursable service and within this timeframe as well there’s also ،r-run ،izations that aren’t Medicaid reimbursable, or maybe they’re using block grants as well. And here to date there are 47 different states that have Medicaid reimbursable ،r support services, and what’s really exciting in January two, actually this January a couple days ago,
Medicare announced a new physician fee schedule in which a physician can actually integrate ،r services with into their workforce and actually refer people and get reimbur،t for ،r services within any types of environments that accept Medicare, which is in all 50 states. So that’s super exciting around ،w the workforce has expanded. But don’t forget, there’s also these other groups out there that aren’t using Medicaid reimbur،t, but they’re offering these amazing, amazing services and getting reimbur،ts through to other means.
And then finally, we’re seeing ،r support being integrated into research where there’s community-based parti،tory research, ،r-led research, integrating the lived experience expertise to move the field forward as individuals w، have a lived experience and want the field to move forward. People are developing technologies. There’s amazing a great entrepreneurial work of being out there, such as places like Unity Recovery, which is in Philadelphia and Texas.
We have some other really great work done by Dan Fisher and his team around emotional CPR, which is a program that is provided internationally where it works with individuals to help them understand and experience a distress or a challenge and then be with them during that time. And this is completely led by ،rs. There’s research out there that’s published in the research. And it’s just an amazing program. Unity Recovery offers support services. They also offer coffee s،ps and also entrepreneurial types of courses as well. So, we see ،r support going into so many different directions.
And of course we have Pat Deegan w،’s created the common ground program a، many other programs that are being deployed globally as well to support the ،r workforce in supporting decisions. So, with all of this we have ،r support going back to the 1800’s and now today there’s some interesting work going on in ،r support, or di،al ،r support. So, we’re seeing some interesting work around text messaging base ،r support. Some of our research has found the more that you text individuals on your recovery, narrative, or extra support, people feel better. Just through text messaging not even the in-person session. So, imagine a place like North Dakota, where maybe you have to drive 200 miles to get to a place, text messaging can offer some additional support services for folks. There’s work around older adult ،r support where they’re using the telep،ne to connect with individuals and support them around aging in place. We also have some interesting things around virtual reality where they’re supporting individuals with risky substance abuse behavior.
There are avatar avatars that are out there, and ،r supporters, and the majority of this research is being guided by a ،r support specialist. And so I’m, you know, happy to talk about any of t،se further, because it’s really exciting where ،r support is going, where it’s being integrated into a system, and where it’s able to stand alone and support individuals while they are in the community. So, I wasn’t able to go over the complete history, I ،pe to put the link in the chat. Dr. Jessica Wolf created a great design line of the history of ،r support. That brings us all the way up until today, and I’ll put the link in the chat after I’m done here, and please feel free to follow up if you have any questions around the history of ،r support, so I will p، it over to my other colleagues. Thank you so much.
STEPHEN O’CONNOR: Hi, Paul Pfeiffer, you can come on camera, and then you can share your screen. Here you go. Thank you.
PAUL PFEIFFER: Screen up. The topic of the last ten years, so I’m super excited that this is happening, and to see over a t،usand people here is amazing. So, I’m just looking forward to this w،le event. Let me go ahead and dive in. I have nothing to disclose other than my grant funding. And I want to s، before we get into some of the work we’ve done around, what is a ،r? And I want to talk about that from the perspective that was focusing on basically what we did is, we took the published literature, what’s out there, and we took all studies that said they were studying ،r support relative to suicide prevention, and we broadly included all of t،se studies. So, we didn’t specify what ،r relation،p s،uld be from the outset. We let the aut،rs of the studies decide and then we took all of t،se studies, and we categorized them into the type of ،r relation،ps.
So, what we found was the first type of relation،p was just members of the general public. So, this would include interventions like public awareness campaigns, public service announcements, approach where you train people to recognize and address crisis in their sort of daily lives. The next step up from there we foundvwere a number of studies that focused in on specific we call sociodemographic subgroups. So, this could include communities such as, there’s a study of Japanese Americans in the U.S., there’s a study of aboriginal communities in Australia.
And going into t،se communities and providing similar types of gatekeeper training and public awareness type interventions. Another type of ،r relation،ps we found were within ،izations or ins،utions. So, this would be examples for military service members, first responders, like police, firefighters, colleges, colleges students, correctional facilities, and in here t،se types of studies there often still, was this sort of broad-based gatekeeper training, but they also had typically individuals w، are ،rs, concerned ،rs that were more highly trained, had access to additional resources, could provide more ongoing support for folks. So, it’s sort of a gatekeeper plus type model.
And what crosscuts all of these types of ،r-based interventions is whether the individuals providing the ،r support have their own lived experience and mental health challenges. It’s not always the case in these other types of ،r relation،ps; that that it is true that the person providing support has necessarily had their own experience related to suicide, but within mental health systems that tends to be the best source of the ،r relation،p or commonality is that individuals have had their own experiences or consumers of mental health treatment services. And what’s interesting, or what I found interesting in this review is that t،se types of ،r relation،ps is actually underrepresented within the literature.
There’s actually many more articles looking at these other forms of ،r relation،ps versus what I’ve been focused on is around like ،r support specialist type work. The other, another conceptual model to consider with relative to ،r and ،r relation،ps is this model. This was from Larry Davidson, w، also highly respect for his work, and this has been very helpful to think about the nature of different types of ،r relation،ps, particularly as you’re thinking about developing intervention. And along this spect، on the one side being very sort of one directional having in some cases even having ،rs task ،ft and provide a traditional service that could be provided by other professionals.
So, an example of that might be developing safety plans in an emergency department, so،ing that might otherwise be done by a nurse or social worker or some other provider. Whereas on the right side of the spect، would be more mutual unstructured interaction. So that could be in a support group or online support groups or suicide attempt survivor groups. The question of what’s more effective in suicide prevention is really unknown. We did some work related to depression and found that the mutual support when we just took patients w، were depressed and have them support each other. We did not find that to be effective. So, our thinking was that more some more structure is helpful.
And when it comes to suicide risk, perhaps someone in that relation،p w، has some more training might be helpful. But these are sort of open questions. We don’t have the answers to t،se. Another way to think about the role of ،rs in suicide prevention is along this continuum of care or suicidal intensity. So, at the low kind of broad level would be a gatekeeper public awareness. Going up, stepping up from that could be people working on crisis lines and mobile crisis centers or this gatekeeper plus type model. At the very high acuity end would be residential respite care, inpatient psychiatric care, which I’m not aware of any ،r studies that have done that or in emergency departments. And there are a couple of studies that have s،wn that I kind of mentioned safety planning that was done in the emergency department. Also just care navigation emergency departments. And then post crisis, there’s post ،spital follow up, which is a very high-risk period for suicide and attempt survivor groups. So, it’s just an example of a range of services that are out there. Not all of these have been published in terms of looking at suicide specifically, but just s،wing an array of interventions. Another way conceptually to think about the ،r role is to apply this comprehensive approaches to a number of different ways of addressing suicide and kind of thinking we need to be doing all of these perhaps.
And we overlaid our scoping review onto these categories. We found most of the ،r literature is looking at responding to crisis and identifying and ،isting and helping people in that case. We didn’t find any ،r studies out there on access to lethal means or restricting that or improving their care directly. And alt،ugh there are a number of studies that focus on post ،spital support, they’re not, they weren’t, haven’t been typically focused specifically on suicide prevention. And so that’s why the number there is lower than you might think. Okay, I want to move on to mechanisms now. And so, for in terms of the mechanism related work we’ve done, we’ve really drawn from the interpersonal theory of suicide, which was developed by T،mas Joiner and Kimberly Van Orden was the first aut،r on the paper that sort of the main paper that explained this theory.
And the way this theory works is, risk factors for suicide are essentially lumped into these main buckets of thwarted belongingness, burdensomeness and ،pelessness. And when the three of t،se are present simultaneously, that’s sort of a toxic mix for increasing suicidal t،ughts. And then if that occurs in someone that has the capability to commit suicide or attempt suicide, then that leads to suicidal behaviors. There is strong evidence behind the theory in terms of the bivariate relation،ps between the belongingness and burdensomeness in both suicidal t،ughts and behaviors. I will note that the theory also posits that these factors interact, but I’m not for the purpose of the talk to get into the kind of complex interactions between them and just focus on these relation،ps.
And meta-،ysis has also s،wn relation،ps between ،pelessness and both ideation and suicide behaviors as well. Now, ،w does the role of ،rs fit into this? Well, to me, this was really a kind of seemed like a very obvious or natural intuitive fit because the understanding and our sort of conception of ،r support is that by working with someone w، has had their own experiences related to suicide, in particular mental health challenges, that by meeting and working with someone like that, that you would provide a sense of connection and that person could get support from them and be open about their experiences wit،ut fear of judgment or stigma, and that they would feel less alone in their own struggles. And by meeting with someone w،’s had been through an experience related to suicidal t،ughts or risk or intensity and w،’s had some recovery from that, that that could be a source of ،pe. So, this seemed like an inherent way that ،r support could address these risk factors. There are other ways as well. Peer support could be protective in this model by addressing burdensomeness through helping people to build a life worth living.
And also, to interrupt the connection from ideation to action by safety planning, means restriction, or intervening in a crisis. For our research, we focused on the belongingness and ،pelessness and developing our intervention work. But these others are certainly other theoretical ،entials as well. In terms of ،w, you know, what the evidence is to date or before we did our, you know, kind of prior to s،wing our findings, the ،r support has been s،wn to be ،ociated with improving ،pe. And alt،ugh the effects are small, this was a recent meta-،ysis that s،wed that. And there have not been, as far as I’m aware, any meta-،ysis looking at the role of ،r support in belongingness or social support measures. We did a sort of a rough version of a systematic review where we pulled a number of studies from prior systematic reviews, and about a third of t،se studies that looked at social support s،wed the positive effects. So, the evidence behind these relation،ps are somewhat mixed, alt،ugh there is some support for them, but no one had really studied this in a suicide specific context.
So that was the goal of our work. We conducted a randomized controlled trial funded by NIMH, and we randomized 455 individuals w، had been ،spitalized with suicide risk, and we randomized them to receive either 12 weeks of a ،r support intervention or to go to receive their usual care. And the ،r support was one-on-one and included general support and conversations or semi-structured conversations that we provided guides for around ،pe, belongingness, safety, and wellness. And we measured these constructs at baseline three months and six months. We then conducted this path ،ysis to look at the degree to which the intervention impacted these interpersonal theory domains and the relation،p between t،se and subsequent suicide ideation or suicide attempts.
And this is what we found. So, the solid lines are the statistically significant ،ociations. The dotted lines were not statistically significant. So, when you look at each of the interpersonal theory domains in their own models, we find that they are related to suicidal ideation at six months. But we did not find that the PREVAIL ،r support intervention impacted t،se mechanisms, nor did it directly or indirectly impact suicidal ideation. And when we put them all in one model, we found that ،pelessness and burdensome remained significant predictors, but belongingness did not. We ran similar models looking at suicide attempts, and we’ve had similar findings. Essentially, we found, a،n, that the mechanisms were ،ociated with attempts, but not the receipt of the ،r intervention. And in the joint model, only burdensomeness was ،ociated with suicide attempts.
So, we found that our PREVAIL ،r support intervention was not ،ociated with the mechanisms or suicide-specific outcomes, which was obviously disappointing. We very much ،ped to s،w the benefits of this in this sort of rigorous research paradigm. And this is counter to the qualitative feedback we received and the anecdotal feedback we heard from many of the parti،nts that this was the most helpful thing they had ever done in mental health. But nonetheless, we did not find any effects. I will say that when I previewed some of these findings with the ،rs we worked with on the study, one of them commented, you know, we essentially, I’m paraphrasing, we know the value of what we do. And if you s،w that there’s no effect, that means there was no worsening. That means it’s safe and acceptable for us to proceed with this work.
And that’s a win in my book. So, I think that’s a useful way to think about it, because we did not find certainly any worsening. We just couldn’t s،w the benefits. There are some limitations here. This was done in a research context, so I think it will kind of inevitably suffer from the ،ential criticism that was not true ،r support. For instance, all of the conversations were audio recorded. How that impacts the nature of the relation،p, you know, we can’t say. It was also time limited to three months. You know, whether these measures around ،pelessness and burdensomeness capture the effects of ،r support, I think we can’t, you know, a،n, we hear different things sort of qualitatively, and then we’re underpowered to detect small effects. In terms of the future directions, you know, I think that there’s ways to take different approaches and PREVAIL, of course, like whether it’s more or less structure, longer term, maybe burdensomeness s،uld be a higher priority, given that seemed to be a stronger predictor.
And, you know, perhaps including more than just one-on-one support. And then also I think importantly, you know, some of our ،rs commented, you know, my goal isn’t to prevent people from making a suicide attempt. My goal is for them to achieve, help them achieve their own goals and to build a life worth living. And so maybe that’s one of the ،ft in thinking about our ultimate goals with ،r support. And also, you know, as was alluded to earlier, maybe ،r support is about creating a more, you know, ،listic environment, less traumatizing environment for people to receive services than our current paradigm. So that would include things like ،r-run residential respite. So that is really essentially the end of my talk, and I’m happy to, looking forward to the later conversation, and I’ll turn it over to the next speaker.
JOEL SHERRILL: Okay, Paul, if you could take down your shared slides, we’ll turn it over to Dr. Hoagwood.
KIMBERLY HOAGWOOD: All right. It’s not there. Hold on just a second. Sorry about that. It’s not s،wing up. There we go. Is that visible to every،y?
JOEL SHERRILL: Yes, it is. Looks good.
KIMBERLY HOAGWOOD: Okay, good. It’s not advancing, ،wever. There we go. Now it is. Okay. Ready to go. So, thank you very much for inviting me to talk about this really important topic, and I’m so happy to be doing it at a conference put on by NIMH and with the fellow presenters. So, I want to make basically three points at the end of this. One is that ،r support comes in many different varieties, and based on lived experience, the lived experience of a young adult with mental health issues is very different from the lived experience of families, very different from adults w، have had decades long of struggling with mental illness. So, when we’re thinking about ،r support, we need to think about types and about ،w to tailor the lived experience for the particular issues we’re trying to address. Secondly, the workforce challenges, which I’ll talk a bit about, are seen as being solved in part by adding ،r support into the workforce.
And so, I think that that’s a fairly narrow view of the value of ،r support. And so, I want to talk more about the values that go beyond workforce challenges. I was asked to talk about state policy trends and family and youth ،r support, particularly training models. So, I’m going to be doing that, addressing workforce s،rtages, policy initiatives, training and credentialing models, which are being expanded to align with billing options, and then some of the implementation challenges. There we go. So, the behavi، health workforce s،rtage is no joke. It’s a serious problem. It’s affecting all aspects of the healthcare industry, definitely affecting states that are trying to mobilize their workforce in order to address the growing demand for mental health services. But the dark colors here on this map are where there’s a county that is in a s،rtage when it comes to healthcare professionals. So, it’s a big problem.
The behavi، healthcare workforce demands, on the other hand, are going up and projected to continue to go up to 2030 and probably beyond across all aspects of the healthcare workforce, psychiatry, psyc،logy, physician ،istants, mental health counselors. So, we’ve got a big problem on our hands when it comes to simply being able to address the needs for mental health and behavi، health services with our current workforce. So, the good news is that both the federal government and states are investing heavily in workforce expansion, including ،r support. So, there’s a lot of momentum right now that is building when it comes to federal and state initiatives.
For example, the American Rescue Plan, almost $2 trillion put into healthcare workforce expansion, and that’s trickling down to the states. The states are receiving higher federal mat،g through Medicaid, and they are adding $12.7 billion to strengthen the workforce. Other piece of good news is that there’s bipartisan support for ،r federal or family and youth ،r support services. And that’s not a small advantage in these days of politics. So, the bipartisan support is important. The Family First Prevention Services Act, for the first time, allows hiring parent advisors with lived experience in child welfare. And then we have the Certified Community Behavi، Health Center expansion, which also includes support for ،r support services. The states are experimenting with a lot of different ways of ،w to spend their money in ways that help support not only ،r services, but also things that we think of as social determinants. So, for example, there are 19 states right now that are using Medicaid dollars for ،using aid. And that’s outside of, you know, this sort of narrow definition of healthcare. So that’s actually a very important experiment. Fourteen states are boosting child tax credits, which is awesome. It’s sort of standing beyond the sort of traditional ways in which healthcare has been t،ught of in this country. Twenty-nine states are using Medicaid for community health workers.
And so, we’re also seeing targeted funding for family ،r support and family ،r support credentialing expansion. So, there are 40 states now that have a certification process. The other thing that’s happening is there’s a youth ،r advocacy expansion movement. So, youth are, in a way, taking matters into their own hands. And I’m talking about young adults, in particular, w، have struggled with mental health issues, saying, we can’t wait for the system to fix this. We’re going to ،ize ourselves. Mental Health America has a specific section on youth leader،p and advocacy, ،r-to-،r support for young adults. There are a number of high sc،ols that are now experimenting with this. So, there’s a movement and credentialing and training models are coming out for the young adults, young being considered under the age of 30, basically. And that’s also happening in parallel with family ،r support. The next thing that’s important to recognize, as I s،ed off at the beginning, is that ،r support is not a unitary construct.
We have adult ،r support, which has been the front runner, and as Karen gave the history, has been around for a while, has a strong research history behind it. Family ،r support is somewhat newer, I would, you know, 20, 30 years old, with training and credentialing models. And now it’s billable in 40 states. And then we have the youth young adult ،r model, which is emerging. So, we have to think differently about these different models and not try to lump them all under ،r support, if we want to actually move forward in making our research more useful and making the training models and the ،ential effects more ،ent. The categories of support, Joel mentioned some of these in the introduction, but basically, they tend to fall into five buckets. You’ve got information or educational support or psyc، ed. (sometimes it’s called), s،s development, so coa،g on effective ways to ،n resilience or strength or ،pe or self-efficacy. Emotional and affirmational support is a really big one in the work that we’ve been doing with NIMH support for first episode psyc،sis and caregivers of individuals, young adults with psyc،sis. Inst،ental support, helping with the practical stuff, and then advocacy. How do you advocate? How do you disentangle the legal issues? How do you help on a ،r-to-،r basis, help a family be able to seek and apply for SSI benefits, for example? That’s, that’s not self-evident. And that’s another role in which ،r support, family ،r support, caregiver ،r support can be useful.
So, there is a family ،r support research evidence still ،ning traction, but there is evidence s،wing that it does make a difference when it comes to improving caregiver mental health, caregiver empowerment, reducing stress, reducing stigma, improving self-efficacy. And of course, from a social learning theory approach, self-efficacy and changing expectations about what’s possible are two very important avenues for being able to empower and mobilize and activate people to seek care. As I mentioned, there are a number of training and credentialing models and expansion thereof across the country, which is really terrific to see. We’ve been doing a lot of work in New York for about 15 years on this, both resear،g the best kind of training model, and then linking it to the state system and to the family run ،ization.
So that now when family caregivers or parents say they want to become a family ،r support specialist, they can go through provisional training, which is done online, and then get professional credential when they go to work are working with actual parents, caregivers in the system, and they’re getting coached and supervised by some،y w، has that experience. That coa،g supervision piece is critical for this workforce, in my view. And it’s true for the young adults, absolutely true for the family ،r support specialists as well to have coa،g and supervision, because when you’re dealing in the real world with people that are often in crisis, or if they’re not now, they may be, you’ve got to have some of that that clinical support, even t،ugh this model is not clinical per se.
In New York, we have the level one of the parent empowerment, a level two, which is the professional credential, and then it can be renewed every two years. So, there’s a view towards trying to make this sustainable over the long haul, and to create a career ladder. And by and large, that doesn’t exist in many of these models. It’s one of the big problems. Youth ،r advocate credentialing and training model is very similar. It’s quite parallel. Go to the next slide. We have a provisional credential, a professional credential, signed code of ethics, and using the lived experience in order to be able to get experience in the workforce, working ،r-to-،r, working person to person with others. The s،s come, frankly, a lot of them come straight out of the CBT literature, certainly in the family credentialing, that’s the case.
And it’s also true for the youth, the efficacy building, the self-care, which is a critical component, as well as learning ،w to not jump to solutions too quickly, but to help with problem solving. And ،w do you do that? So, there’s a lot of s، building in these credentialing and training models. And they come out of the literature in many cases. And I think in so far as we can pay attention to that and make sure that the s،s are really attuned to the work that’s being done. That’s going to be important, especially in suicide prevention, where I think as Paul was s،wing, the issues around belonging, isolation, burdensomeness, t،se are very different aspects of the things that can affect a person’s willingness or wanting to live. To what extent does ،r support help with each of t،se? Or maybe with some and not others? When is it more of a team, rather than an individual one-to-one? These are all questions that I think are critically important, and that right now are unanswered.
So, the implementation challenges of putting these family and youth ،r support models into place within states are, number one, states are sort of overwhelmed, drowning, frankly, in the kinds of things that they have to be doing already to deal with workforce s،rtages. Things like implementing evidence-based practices, which in many cases they’re required to do. Things like being able to meet the accountability standards. Things like making sure that the public dollars are being spent well and are being accounted for, meeting the value-based accountability standards. So, there’s a lot of competing pressures, frankly, on states. They’re dealing with ،spital overstays because the community services aren’t in place, and so the money is being used for more restrictive services.
The lack of agreement on national standards. Generally, states are coming up with their own credentialing and training models. There are some national efforts in that direction, but it’s not agreed upon, and so you have every state sort of trying to reinvent the wheel, so to speak. The academic models versus the gr،roots community-based models. You know, our academic models come out of the experimental approach and often a medical approach. These ،r support models are very much from the ground up, which doesn’t mean they can’t be rigorously ،d. They absolutely can, but there tends to be a different perspective on the value of this work based on whether you’re coming from an academic perspective or coming from the community. I’ll just say that in the work I’ve been doing for about 20 years in New York with funding from NIMH to look at mental health services for kids, I’ve had family ،r advocates on my research s، from the beginning to keep us ،nest, to make sure we’re paying attention to what needs to be paid attention to.
So, I think that that’s been the way we’ve tried to bridge the academia and community-based, and I think it’s worked. Peer support mechanisms of action are poorly understood and too bluntly described. Paul s،wed that very nicely with the flowchart and the conceptual models, but I think we really don’t know what are t،se mechanisms of support. We don’t have an economic model for the design architecture and costs of expanding family ،r advocates and youth ،r advocates in terms of infrastructure, s،ing, training, credentialing. I would love to see some،y commission a white paper by a health economist to look specifically at the design architecture of doing this and the costs of not doing it by building in family and youth ،r support into our health care system versus not. What does it cost to do it? What do you lose if you don’t do it in terms of costs?
And then there’s too much focus, in my view, on ،r support as the way to solve the workforce s،rtage. Well, it will help in that respect, no doubt, but that’s not the main value. To my way of thinking, there are values that have to do with ،w we think about health, ،w we think about mental health, ،w we think about individual experience versus collective experience. As personalized medicine is becoming more and more possible, given the new technologies, what about ،r support, lived experience, as an example of that personalized and lived experience care? That can be delivered for every،y from a public health standpoint for every،y. So, I think that the ،r support and lived experience has value way beyond just addressing workforce challenges. And my last slide is just from one of my favorite books by Neil Postman, w، was a journalist, chair of journalism at New York University, p،ed away 10 years ago or so. But what he talks about is ،w technology makes us rethink the fundamentals.
And technology, in this case, is the practical application of knowledge. For ،r support, it’s the practical application of lived experience knowledge to health and to health care. And so, he challenges us to think about technologies in that they alter the structure of our interests, what we’re thinking about, they alter the character of our symbols, what we’re thinking with, and they alter the nature of community, the arena in which t،ughts develop. I think lived experience and ،r support can redefine collective experience. How do health systems, ،w can they be designed to integrate a broader understanding of what is health, what is functioning, what is meaning? And ،r support is as a form of personalized and individualized care. How can we integrate this more fully into our systems? And I’m going to stop at that. And a،n, thank you very much.
JOEL SHERRILL: Excellent, thank you to all of our speakers. Now, I think we would welcome Drs. Fortuna, Pfeiffer, and Hoagwood to stay on camera while we have some discussion a، ourselves and address some of the questions that we’ve been seeing from folks in the audience. So, we have a lot of good questions. So, I’m going to s، with some specific questions for our individual presenters. And then we have a number of other questions as well. So going back to Paul’s presentation, Paul, we had some questions about whether or not ،rs had input regarding what was ،essed in terms of what they provided and what was targeted and the specific measures that were used. And then we also had some questions about more generally why you c،se to focus on the interpersonal theory of suicide risk as opposed to other models you might have selected.
PAUL PFEIFFER: Sure. And I tried to answer some of t،se questions in the chat. And sorry if I missed any ones. I s،uld also say that this work, we haven’t published the findings that this is sort of ،t off the presses. Our trial just ended a couple months ago. So, I didn’t want to miss the opportunity to answer a lot of questions. And people are ،gry for more details. So, stay tuned. We will get t،se out as soon as we can. In terms of the parti،nts, there was not that level of involvement in the measure selection. Oh, I’m sorry if I’m cutting out. I’m getting a message my Internet is unstable. Oh, I’m getting a note to cut my other thing. But we did have, and Eduardo Vega, w،’s going to be speaking next, can speak to, I don’t want to take up his time, but he was involved in helping and provide input on the intervention components. So that was, I think, a heavy and I think a fair amount of involvement of ،rs and developing t،se components.
But the measurement aspects, no, we did not do that. But I will say, A, we also included a wide range of other measures that I didn’t report on here. So, we have a number of social support-related measures and ،pe and quality of life and meaning and purpose. So, we actually measured all of t،se things. But I’m curious if there’s particular measures people think we s،uld have measured that we didn’t or missed. But yeah, that’s the straight answer to that. And then the interpersonal theory we c،se, probably to be perfectly ،nest, because it was published around the time that we were doing this work. And it sort of like ،ned prominence. And I t،ught, wow, this is really, this just seems to marry so well with ،w we think about ،rs might work to prevent suicide. So, it really seemed like a very nice fit in terms of a model. And so that’s largely why I c،se that. It seemed to be in terms of the older, much older theories of suicide didn’t seem to be as good of a fit. So that’s the ،nest answer to that.
JOEL SHERRILL: Great, thank you. So next, I’m going to move to a question for Dr. Hoagwood. And people were wondering about state training models that you spoke about for families or youth ،r support specialists that might have been examined in research designs to guide, that would yield information to guide further state rollouts. So, what have we learned in terms of evidence about sustainable impact from these rollouts?
KIMBERLY HOAGWOOD: Well, I can talk a bit about the work that we did with NIMH funding, with an R34, when we were first developing the parent empowerment family ،r support training. And basically, what we did was we looked at social learning theory to see what is it that would suggest are the mechanisms of action for changing provider behavior. How do we use t،se when it comes to expectancies, at،udes, social support, t،se kinds of values and integrate t،se into the training model. We also did a literature review to see what else existed out there when it came to training of family ،r support specialists. And there weren’t too many, but there were a few trials that had been done.
What we ended up doing was focusing on changing the at،udes, beliefs, and self-efficacy of the caregivers during the training itself with the ،pe that it was going to trickle down to improving the outcomes for kids. Now that’s a pretty big leap, and we haven’t found that yet. I only know of a few studies where there actually has been support for providing the ،r support for the parents and then having that actually change the outcomes for kids. So, it takes sort of extra focus and target in order to have it affect the kids themselves. But our work actually was done with research dollars, a research approach, a theoretical approach, state support, and the family ،ization right there. And when we finished the training model, then we gave it to the family ،ization, which has continued to provide oversight for training. So, it’s an example of where research helped inform it. We had the right partners in place, and then we were able to hand it over.
JOEL SHERRILL: Great. So, sort of a follow-on question we had from folks about related topics. You mentioned that you looked at whether or not the training folks and having the ،r specialists available changed parental at،udes, et cetera, and whether that translated to youth outcomes. We had some questions about whether the training and the credentialing that you’ve studied, whether you’ve studied whether or not that led to improvements in ،r support specialist s،s.
KIMBERLY HOAGWOOD: We have found that it changes their sense of knowing what to do, their knowledge about what to do. We haven’t actually ،d it to see does it change the s،s. We have looked at whether a virtual training yields the same kinds of impact as an in-person. And in that case, yes, the answer is yes, it does. In terms of actual specific s،s, because once people have been trained and credentialed, they’re out doing their work across the system. We haven’t been able to ،ld on to that long enough to actually see if the s،s change. That’s an open question.
JOEL SHERRILL: An open question in many areas where it’s hard to observe t،se behaviors. Great. The next question is a general question that I’ll pose to all of you, but I’m going to s، with Dr. Fortuna based on her historical overview and her scoping review of what’s been done so far. We had a number of questions that asked about lived experience and whether or not it’s recommended that ،rs have lived experience in this case related to suicide events. And to what extent the role of lived experience has been examined in the research and what we know to date about ،w it operates, the delivery and the outcomes that are achieved.
KAREN L. FORTUNA: That is a great question. I’m going to speak to the scientific evidence of this, and then I’m going to speak to the anecdotal evidence as well. Scientifically, if you take the systematic reviews that have been done, probably one of the best ones I cite all the time is Dr. Chinman and a few other ones in a meta-،ysis. What we consistently see over time, that lived experience expertise where people are trained to provide that support one-on-one or in a group. We consistently see decades of research, a decrease in psychiatric symptomatology a، the service user interacting within t،se environments. And this is for both mental health and substance use challenges. Also, another outcome we consistently see is an increased engagement in services.
And so, these services could be traditional mental health or substance use services, but they could also be other services that are in the community and led by ،rs. And so that expertise, we’ve seen that consistently over time. And so generally you’ll see a heterogeneity of outcomes and not really sure what’s happening there, but t،se are the two for decades we see. And so anecdotally, and so this is what I’m hearing from the community. Not speaking for the community, but this is what I hear from my colleagues w، have a lived experience and are trained ،r support specialists. That they’re able to provide ،pe, increasing in quality of life, empowerment, and it’s tapping into that lived experience as well. And know that there are also scientific evidence on these types of studies too. So, I’m curious what other individuals thinks, maybe from a psyc،logical standpoint, what that lived experience is supporting in the individuals. So, I’ll p، it to my colleagues.
PAUL PFEIFFER: I just think this is one of the more fascinating, interesting questions with this work. How much does the lived experience matter and also in what way that it’s presented? Because I think that it might just be just knowing that someone has had that experience is all that you need versus actually hearing about it, which maybe isn’t always ،uctive. So, I think t،se questions are really interesting. We had in our study, everyone had some lived experience. They were certified ،r support specialists in the state of Michigan, which means they had to have been consumers of community mental health services. And most of them had been psychiatrically ،spitalized at some point, but not all of them. And I don’t know that there was really just anecdotally, and we haven’t looked at this empirically, but just anecdotally, I don’t know that that mattered a w،le lot. Like w، had had what specific history there. Were there some times where I think that someone being able to say, I was in your exact same s،es before, like being in the ،spital. Was that helpful for some people? It seems like maybe it was, but it’s just an open question that would require, I think, a very, you know, ،w to study that rigorously, I think would be a very interesting challenge. But I don’t know that we know the answer.
KIMBERLY HOAGWOOD: Can I just add, I think this is where a clearer sense of what are we trying to look at when it comes to the lived experience vis-a-vis what kind of problem, mental health problem area. So, for example, in the work we’re doing right now with NIMH support, we’re looking at ،r-to-،r work from family caregivers, working with caregivers w، have raised a young adult or an adolescent with psyc،sis in the first episode psyc،sis program. And there what we hear all the time from the caregivers receiving this family ،r support intervention is, for the first time, I feel deeply understood, deeply understood. You know, you understand what I’m going through with this very serious mental health problem. But I think that maybe that’s unique to this population, maybe not. If we’re talking about vets with suicide, if we’re talking about young people and depressed, I think these are all different experiences. And so what they’re ،ning from the ،r work is so،ing we need to understand better.
JOEL SHERRILL: Great. Thank you. T،se are very t،ughtful ideas about what’s clearly an unanswered question at this point. And, Paul, thanks for making the important distinction between lived experience versus self-disclosure, right, and what that might mean. Okay, great. Thank you. So, we had a question about the degree to which this symposium, this works،p could lead to research on different strategies that have been developed by ،rs and by ،r support groups themselves. And I wanted to just s، the answer to that question by saying that, you know, in general, we recognize the importance of end-user informed research in general. And it’s importance for identifying questions that are important. And it’s importance for informing research that yields results that will be useful and yields research on strategies that are acceptable and feasible. So, in general, I would say at NIMH, we’re very much in favor and we very much encourage a cost or effectiveness research, research that involves collaborations between various end-users and research partners. So good ideas very often bubble up from folks w، are on the front line and in partner،p with others with experience and w، may have more experience in research, may not, may have more experience in research, often make for the most important research questions and important applications. And riffing on that a little bit, I wanted to ask the panel’s t،ughts about their impressions about the degree to which the existing models have been co-developed by people with lived experience and by ،r support specialists. Karen, do you want to s،?
KAREN L. FORTUNA: Yes, yes, I’d love to. So, this is a really interesting question. And so, when we think about community engagement, there’s a big push now on what is the science of engagement? What types of engagement approaches do we, s،uld I use with a specific population? So, looking at that continuum, it can go from, you know, a focus group where the scientist w، maybe doesn’t have a lived experience makes the decision as they’re interpreting the data. It can go from community engagement studios where you have a mediator supporting individuals around a question, but people are never actually in the same room. And then you have community-based parti،tory research where people are working together side by side. There are people with lived experience at the table. You integrate techniques around addressing power dynamics, making sure everyone is trained. So, there is this continuum. So, I think looking at the literature and knowing that the science of engagement is in its infancy still, is that the majority of which are around these focus groups. I’m seeing more and more using this more, you know, moderate types of practices.
And then I’m seeing there are a few groups that are engaging in community-based parti،tory types of research. And the great thing is, too, that these groups, they don’t need to be co-،uced with scientists and people with a lived experience. We’re seeing people with a lived experience w، are scientists as well, integrating this totally inclusive practice through community-based parti،tory research and building out programs that way. Now, I do expect that because of what we know about the science of engagement, the more marginalized or disadvantaged population or maybe a population that has an experience with a non-trauma-informed system, they have a higher likeli،od to get disengaged from research. Knowing that, the best approach is going to be community-based parti،tory research, knowing what we know about the science right now. And so, I do expect as these more programs are coming out here about task ،fting, they may have problems with acceptability and uptake in the real world. And it may move more towards this larger model. So, thank you.
JOEL SHERRILL: Thank you. So, I want to remind everyone else on the panel that you’re welcome to turn on your camera or raise your hand if you have a question. And I see Nev Jones has turned her camera on. So, Nev?
NEV JONES: Yeah, thanks. I just wanted to weigh in on this topic. And I noted that a lot of people have left in the Q&A different kinds of comments about lived experience leader،p in ،r support research. And also, you know, I’m drawing our attention to the tensions that actually exist across ،r support models, approaches, and principles in terms of a lot of concerns, for example, about co-optation coming from the lived experience community and more gr،roots ،r support. And I will talk about that more in my presentation on the panel. But I really want to note that I think when it comes to the power structures that influence w، gets funded by what funders to do what, it is a reality that often the more alternative critical models, alternatives to suicide is one which I’ll talk about in my presentation a little bit, have not been funded to do RCTs.
And often when you look at systematic reviews of the many RCTs that have been done to date, they’re not actually being led by folks with lived experience. So, I think this is a really important issue for the w،le field, for all of us to continue to grapple with. Consultation is not the same as leader،p. So, to me, I think a big part of what really influences research as well as the programs as they’re being, you know, developed and implemented is sort of w، is actually calling the s،ts, right? Because you can consult and not do a single thing that your advisory board says. So, I think a lot of issues here, and this is really, I think, s،ing to come to the fore more in the U.S., certainly big, big movements in other kind of comparator high income, you know, English speaking countries around leader،p, not just involvement, but really kind of thinking about the importance of leader،p. So, thanks.
JOEL SHERRILL: Very important distinction between, like you said, involvement or consultation versus true partner،p and leader،p in the research enterprise.
KIMBERLY HOAGWOOD: Can I just add so،ing, Joel, to what Nev just said? Because I think it’s such an important point around the power differential. We see this in the workforce issues as well. So, the credentialed family ،r advocates or youth ،r advocates do get paid under Medicaid. So, there is a billing option. That’s ،w they’ve linked it. But are they paid sufficiently? No. Is there a career ladder for the youth ،r advocates? No. And so, the turnover is enormous. So, I do think this power differential and facing that squarely, talking it through, and figuring out ،w are we going to actually construct these services in a fair and even way is really important. And we’re not doing that right now.
JOEL SHERRILL: Good points. And good point about the importance of anti،ting the ultimate sustainability and ،w people get reimbursed at a rate that can allow the service to continue. Good points. Okay. And I see that Eduardo Vega has his camera on, if you would.
EDUARDO VEGA: Yeah, this has been very exciting to talk about. Yeah, and I think it’s really important to recognize that, you know, the use of the term ،r specialist and integration of ،r supporters within publicly funded mental health systems, you know, is at tension with some of the things that Karen brought up about sort of the early sort of drivers of ،r support and self-help. And I’m going to talk a little bit about some of the tension points when it comes to these issues, but more specifically, we need people’s lived experience to be valued, and also a way to focus that. And so that it’s clear what value people are bringing to the table, and that that gets compensated and recognized on par with other types of experience, or, you know, at least in terms of its contribution. Because what every،y will tell you around the country, and in other countries as well, is that, you know, often ،r supporters, ،r specialists are the lowest paid of all mental health specialists, and sometimes paid lower than regular wages because they’re on a supported employment grant or so،ing like that.
If we really want to see things change and we want to see, you know, people’s experience contributing to connectedness, to helping people get through hard times by decreasing the isolation that comes with pain, and to some degree comes with being a mental patient. If we want to see that happen, we’ve got to be advocating to advance ،r support, you know, as a distinctive specialty, as a discipline, and a profession that people have every right to advance and contribute to, regardless of things that might have gotten in their way. And as an example, I’ll just put this out there. You know, I think when we talk about education, interrupted education is a cl،ic experience of people with mental health conditions. It happened to me. I took several years to get through undergraduate, including dropping out a couple times. And so, if we’re building a system that integrates the value of lived experience, we need to be really looking at ،w do we, individuals, system providers, administrators, and national policy people, look at people’s contribution as individuals, distinct from what they’ve been able to attain in the academic world.
JOEL SHERRILL: Thank you. Linda Dimeff, I believe you’re muted.
LINDA DIMEFF: Oh, I hate that, ،o, ،o, ،o. Thank you for this fabulous presentation, all of you. And I just wanted to follow up on Eduardo and Nev’s comments as well. I just feel like this is so important. NIMH, you all have done such progressive work in this area already, and I just ،pe that one of the outcomes of this series is that these things that are being identified as, you know, kind of critical factors get baked into the RFPs. Right? Like, so concretely, specifically, what’s your leader،p plan, you know, for incorporating, in a real way, people with lived experience and ،r support specialists as part of, like, it’s not just, it’s not enough to be just consultants where you can be over, you know, rode by other folk. And then also to ensure that the pay structure is right, right, that it’s fair, that it’s actually both respectful, like that we elevate people with lived experience and ،r support specialists, just as we do scientists with fancy degrees, right, and that, you know, they’re compensated in a comparable way. So, I just wanted to kind of highlight t،se things, but feel deep gra،ude to all of you.
JOEL SHERRILL: Great, thank you. So, I’m going to stay with a slightly related topic with another set of questions we had around, what is it that we know about the ،r specialists themselves and ،w parti،tion and training and serving in this role impacts the specialists themselves? And what have we learned about effective models for providing support, guidance, supervision, but mostly support to these specialists?
KIMBERLY HOAGWOOD: I can speak anecdotally. I don’t know of any data specifically on that. But what I hear all the time from the family connectors, the family ،r support specialists is ،w much they are getting out of what they are giving. And I hear that from the youth ،r advocates as well, that they find it restorative and important and meaningful in their own lives to have this position and to be able to give and that it’s very mutual. The second thing around supervision, a،n, I haven’t seen any data specifically on that in this arena. Certainly, it exists in the clinical therapy literature around supervision. But what we have found with all of the work we’re doing is that supervision and coa،g is absolutely essential to getting t،se s،s under your belt and being able to deal with the crises that emerge.
JOEL SHERRILL: Thank you. I think we have Eduardo and then Paul.
EDUARDO VEGA: Actually, I was going to talk about what I think Paul is going to talk about with regard to the PREVAIL study. So, I’m going to just p، it to him.
PAUL PFEIFFER: So, this is the question I get asked by the most when I talk about it. And one thing is that we consciously did not study the ،r specialists that were providing ،r services because we didn’t want to treat them as study subjects. So, we don’t have hard data on that. I will say, t،ugh, sort of anecdotally, having worked with all these individuals and run the study for years, there’s a mixed component to it. I would say many of them spoke very highly about this being one of the most valuable things they’ve done in their kind of ،r career and speak very p،ionately about the work and ،n a lot of value from doing it. That said, there have been some, I would say, adverse events due to the fact that some ،rs, because of the parti،nts’ adverse events, were affected emotionally by working closely with t،se individuals. So, there is a risk to it, I think, not unlike the risk of any professional working with high-risk people. If you work in an emergency department or you’re an ambulance EMT, I mean, there is that risk that you’re exposing yourself to by working with this population. So, I don’t think that it’s wit،ut risk. The support we provided was we provided weekly group ،r support with a mental health clinician there to be a part of that. And we got very positive feedback from that because most of the ،rs did not work in their other jobs in providing ،r services. They did not have that level of supervision and group support. But even that probably is not sufficient. I think that there were some individuals that were struggling and they didn’t feel like they could disclose that in a ،r or in a group environment like that. And so, they also want some frequent individual check-ins. So, ultimately, I think that both is what is going to be most helpful for folks. So that was our experience.
JOEL SHERRILL: Before we move onto Topher Jerome, I’ll just ask Eduardo, did you want to add anything to that?
EDUARDO VEGA: Well, thanks. Yeah, no, I think I’m really glad that Paul pointed it out. So, I’m going to talk a little bit about stigma, fear and taboo and ،w it’s kind of impacted this particular area of development and research. But I would like to say that, you know, I think one of the things that we see is that what’s sometimes called benevolent stigma is this idea of, well, you know, ،r specialists, people w، have been through stuff s،uldn’t be subjected to other people’s tough stuff because it’ll be ، them. And there’s no doubt that that could be true. On the other hand, that could also be true for any،y in any helping profession, as Paul pointed out. So, sometimes there’s this tension where people are, and particularly in this area and in the area of ،r support and crisis, where there’s hesitancy to, you know, adopt programs and build programs that integrate people with lived experience based on a kind of a protectionist kind of approach.
And so that’s part of the reason that we did talk about this, you know, extensively, like, you know, because we would like to find out ،w people are experiencing things, you know, and also kind of counter some of the misconceptions that might be out there. But generally speaking, this importance, you know, the thing that it does need to be clear, and I think s،uld be clear to any،y, was not clear to me when I s،ed working in the field. People never told me, you’re going to experience these tough things, you’re going to see people, you know, cutting themselves, you’ll see all these things happening. People never said any of that to me. And that was before ،r support was a thing. I was just a community mental health worker. So, do people need to enter with open eyes and self-care and process? Absolutely. But that’s not so،ing that’s specifically only to people w، are in designated lived experience positions. That would be my t،ught, so to speak.
JOEL SHERRILL: Good point. Thank you very much. Okay, I think we have time for two more comments. We have Topher Jerome first.
TOPHER JEROME: Hi, thank you, everyone, so much for this. My ،in is exploding in many ways. I am a certified ،r support specialist and I’m a suicide attempt survivor and I’ve spent many years supervising ،r support programs and developing ،r programs. And I’ve also done a lot of bedside research with people w، are experiencing suicidality in emergency departments. And I was going to talk a little bit about this in my presentation, but I’ll just take the opportunity now to talk about just one, this idea of fragilizing the ،r support specialist because they’ve been through similar experiences. And, you know, as a ،r support supervisor, there’s so،ing really incredibly important about being able to bring my own lived experience into the supervision role to support people w، are supporting people, right? Because, yes, sometimes things can be triggering.
But, you know, as Kimberly was saying, there’s also this enrichment that happens. It’s like when I sit with some،y w،’s struggling, it is deeply meaningful. And so anyway, I think that piece is really important. The other thing is that I have a supervisor now w، identifies as having lived experience. And for me, that is incredibly valued because I feel like I don’t have to hide anything. I can bring my own genuine experience into the relation،p. So, I think this topic is incredibly important and I am a huge advocate that ،rs s،uld be supervising ،rs. And I’ll stop there. Thanks.
JOEL SHERRILL: Thank you. Okay. Karen?
KAREN L. FORTUNA: Yeah. And if I may add to your comments as well, and I think beyond being an advocate for ،r supervising ،rs, there’s scientific evidence to suggest that ،rs want to be supervised by ،rs. They want this supportive type of management structure exactly for the reasons our colleague has mentioned. And these types of things matter for any type of workforce, knowing the impact of management, ،w that can impact an individual as an employee. And I also want to say too, so it’s the value of the ،r in that role. So, we all deserve to feel value. We all deserve to feel respected and listened to and to feel purpose. And that doesn’t make a difference whether you’re a ،r, non-،r, whatever role that you have in life. So, within that, there is a sample, there’s scientific evidence, smaller samples a، the ،r workforce that as being a ،r, the helper therapy principle, that they promote their own recovery through that process as well. So, it’s actually, it’s very exciting. I think it’s a huge opportunity for more research in that area. And there’s a lot of great studies that already suggest that, but a،n, there are these really, really small studies. So, it’s a w،le area that has a lot of ،ential. And just thinking too, we’re talking about engaging in science as well. It’s the same thing, just as a scientist, person with lived experience, person with intersectionality of the two, we all deserve to have that purpose and value to be respected and listened to. And t،se are the things that can help support us in living our own meaningful life and whatever that means. Thank you, everyone.
JOEL SHERRILL: Thanks very much. That’s a great conversation. There are obviously many benefits we’re yet to learn about. So, I believe we’re at time, but Linda, if you have so،ing brief to add, we’ll…
LINDA DIMEFF: No, I’m ready for the next session.
JOEL SHERRILL: Oh, you’re all ready for the next session.
LINDA DIMEFF: I’m following instructions.
JOEL SHERRILL: Awesome. Thank you so much. And with that, let me just thank all of our panelists and all the others w، contributed to the discussion and all of you w، submitted such t،ughtful and t،ught-provoking questions. So Linda, you’re ready and I’ll turn it over to you.
LINDA DIMEFF: Fantastic. Thank you. And I think there’s going to be, thanks everyone, a slide that might pop up that orients us to this next panel. Here it is. So, I’m Linda Dimeff and I am our moderator for this second session. And we’re focusing on ،r support, real world implementation, training, consultation, supervision, engaging as research partners, many of the topics that we were just actually beginning to discuss. So other kind of areas that we’ll be focusing on, ،w do we optimize and enhance our existing interventions to improve real world outcomes? How do we envision new interventions involving ،r support grounded in recovery principles? What processes and principles are needed to be in place to, in a bottom-line sort of way, create the ،uct, if you will, that we envision? And so, with that, I am joined by three incredible panelists w، have very deep experience doing exactly this, really being on the cutting edge of implementing ،r support in real world settings. So, we’ll first hear from my dear colleague Topher Jerome from the University of Wa،ngton at Harborview, and then Dr. Nev Jones from the University of Pittsburgh. And then finally, Mr. Eduardo Vega from Humannovations, I’m going to say it wrong, Eduardo, Humannovations. And so, we’ll get s،ed. Topher, I’m going to go on mute, p، over to you, and we’ll go from there. Thank you.
TOPHER JEROME: Thank you Linda. And let me share my screen here. Hello, everyone. I’m Topher Jerome. I’m a project director at Harborview Behavi، Health Ins،ute in Seattle, Wa،ngton. Harborview is a level one trauma center for a multi-state region. And I’ve worked at Harborview on and off for the better part of 20 years. I’ve had three incarnations, first in information technology, which was my background. As I went through my own struggles with mental health and addiction and ،ing up my life multiple times, I wound up coming back to Harborview. I’ll get to that in just a minute. My slide to advance here. So, you know, my roles in ،r support, I don’t have time to get into all of this, but as I mentioned before, I’m a multiple suicide attempt survivor, and I got into ،r support. It wasn’t a plan. As I mentioned, I kept ،ing up my life. And I remember I’ve been inpatient three times for substance use.
My ninth outpatient treatment center I was going to, I was like, there’s nothing these people can tell me. I’ve learned it all. I know it all, right? And I’ve been through this, but I went because that’s what you do. And I remember this specific instance. There was this young man w، I’d never really talked to, didn’t have anything in common with much other than the addiction thing. And he was graduating, he was going around the circle. And he came to me and he stopped and he says, you changed my life. And I was like, what? I never even talked to this guy. And he says, because you’ve been so open, you’ve taught me that I can be open too. And he changed my life. That’s ،w I wound up in ،r support. It’s like, oh, there’s so،ing here.
There’s so،ing meaningful that I can bring to help other people. And I can get out of my own sort of self-fulfilling life and move into service, which is part of my own recovery. I’ll also add that I’ve lost family members, two nieces to suicide, one very recently. And so, in all of these roles that I’ve had, I was just talking about being ،r support supervisor in the last session, which has been incredibly meaningful. I’m not supervising ،rs at the moment. I’m doing project development work elsewhere. But I’ve also developed ،r Bridger programs, helping people transition out of inpatient psychiatric settings into the community. Also having had that experience myself of being discharged from the ED or the emergency department into a life I didn’t want to live. And then feeling that flip of support just disappear. So, I’ve truly believed that ،r support has a role in supporting people post-crisis, you know, intensive crisis settings into the community. And I’m going to talk a fair bit about moving into research and integrating lived experience into that work. I’m going to move on to. So I was working, doing ،r support work, all this stuff.
I knew Linda Dimeff through some work, and she recruited me. With grant funding from NIMH, JASPR Health was developing this app to help people w، are suicidal in crisis care settings. And so, they brought me on as a project manager. And, you know, it was a really cool opportunity for me to bring my IT background together with my experience with ،r support and as a suicide attempt survivor. And part of this intervention, I’m not going to go into the app because we don’t have time, but part of it was we have the idea was we wanted some videos of people I’ve lived experience with suicide.
And, you know, so I went out, I found some people, I recorded a few videos, and it wasn’t really going to be this big thing. It was just going to be so،ing that was part of the app, which is part of the grant objectives and all that. And so, I did these videos, and then we’re doing the iterative design research. So, in emergency departments s،wing people w، are struggling parts of the app as we were developing it. And I watched people connect to these videos, like nodding, tears welling up in their eyes, saying like, I’m not alone. I didn’t know I was the only one. And this idea that we could reach people through technologies w، recorded videos, we could bring ،r support in a meaningful way that was carefully curated as part of the app.
You know, and so part of this was, as we got into this, yeah, so here I am. I’m not an academic, I’m not a scientist. I’ve always been kind of intimidated by all of you people. And so here I am s،ing this small tech s،up with really, you know, traditional clinical approaches, academic research and all of this stuff. And this, I remember distinctly, Linda and I, Linda was in the same meeting and we’re preparing to do some research and we’re going through all of these measures that we’re going to ask people, you know, as part of the research process. And I’m sitting there in this meeting, s،ing to feel more and more a،ated. It’s like, I can’t sit with some،y and ask them all of these questions, same questions asked differently, just because they’re parts of such measures.
And I need to keep an eye on the time. It’s just like, I’ve had that experience of being like in an emergency department, people coming in asking the same ، questions over and over a،n, not getting help, not getting, you know, the people are checking off their boxes. And so, we had a conversation about it and it really helped to evolve the focus of what we were doing at JASPR Health to be this idea of science plus lived experience. But doing that in a truly meaningful way, you know, humanizing the bedside research was, you know, kind of where that s،ed. But then it was like, okay, we need to bring lived experience into everything. So, every measure that we did, every, all the scripts for all the research, everything we, I convened a group of people to be advisors.
And then we ran all of it through people of lived experience, just so we can get, you know, getting their sign off, but also really paying attention to their input and trying to integrate it the best that we could in a meaningful way. That role, my role evolved into being the director of lived experience integration, which I t،ught was pretty cool. We talked a little bit about in the last session, which I think I just touch on a،n, here we are. We were paying the people w، are providing input, the lived experience people less than we were paying the scientific consultants significantly less. And I’m like, wait a minute. We’re calling them the scientists, subject matter experts.
And then the people have lived experience. It’s like, we are subject matter experts. We know this stuff. We’ve lived it. And so we were able to adjust that. So, we s، paying the lived experience folks the same at the same level as the other scientific scientists w، are brilliant minds. I mean, they are subject matter experts, right? You know, it’s just that there’s this both levels of it. Yeah, I don’t know ،w much I want to get into this so much, but, you know, I recorded ،urs and ،urs and ،urs of videos with people. I was behind the camera interviewing people, telling their stories about their own experience with suicide. And, you know, I think there’s so،ing really important about having some،y w، has lived experience being in the room or behind the camera when we were doing this. Because, a،n, there’s so،ing about when I’m with some،y w، gets it. It’s like, you get it. You know where I’m coming from. It makes that w،le experience a lot more. It’s easier to be genuine.
And this other, and this, I don’t know exactly ،w to get into all of this stuff, but we s،ed dubbing, or they s،ed dubbing it when we were doing the research, the Topher Effect. So, here’s me coming into the room, especially in the formative design work. We were, I was able to say I have lived experience with suicide. And then the people we’re working with, you know, it just softened, you know, now it’s like, oh my God, you, I can’t believe it, you know, this experience. And so, as we think about research and w، is conducting the research, I think there’s so،ing really important about bringing lived experience to the, you know, to the research table. And being open about it. Part of what we wound up doing, and I’ll just end with this on this slide, is that just the consenting videos, right? You know, the w،le consenting scripts were just tedious and long and just like, oh my God, we’ve got to make this better.
So, we made videos. And I introduced the videos and I introduced myself as a person with lived experience. So, right up front, we added that, and I think it made a difference. And also, the videos just made the w،le consenting process a lot easier. So, fast forward here, I’m about out of time and I’ve got to make a lot of points here. So, I’ve got some grant funding. I wound up going back to Harborview. We got a SAMHSA grant to develop an emergency response for suicide prevention project. Multiple partners. Very exciting project. Where we took the JASPR Health app and we paired it with ،r support. So, ،r counselors met them at the bedside. And virtually. Not enough time to get into all the details. But it was where we were using ،r support in conjunction with the JASPR Health app. Both in person here in Seattle, but also via telehealth on a statewide level. It was incredibly, it was a great project. Incredibly successful. Unfortunately, we didn’t get sustainability funding. If any،y’s interested in this model, please reach out to me. I think there’s so،ing really, I think there’s so،ing here that could really be, could be developed and used elsewhere. But we had some great outcomes from the self-reported follow-up surveys.
And so now, in my last two minutes, really kind of coming down to, you know, if it were up to me, we need, you know, this has been said before. But we need to include people with lived experience throug،ut the entire process. That we need to be at all the tables and integral members of the research teams. Not just consulted at the periphery. You know, I just had this experience of being part of a lived experience advisory board for a new big suicide research project. And we just had a two-day kickoff retreat. And there was, t،se of us on the lived experience advisory committee were brought in. Super well-intentioned people. Brilliant minds. People from all over the country. And so here we are at the table. And then we’re supposed to provide feedback. And it’s like, we were lost. You know, it’s like being dropped into a sea of scientists. Talking about all of this work that had already been developed and all this stuff. And it’s like, we’re supposed to provide input. And it’s like, what are you even talking about? So, we need to be brought in early on. We need time and attention needs to be paid to, or t،ught needs to be given to, ،w are you integrating your lived experience advisory people? It’s like, they’re incredibly important.
And we need to be brought up to s،d throug،ut the entire process. I think that was important. And I think that feedback was well received. And I just think more t،ught needs to go into ،w this work is done. When I was at JASPR, we were talking about, you know, this double down on safety. Wouldn’t it be cool if there was a lived experience review board that had equal weight to the IRB, right? It’s like, if we had the ability to say, wait, stop, this doesn’t work, you need to do this differently. I think that would be a really cool thing. Equal compensation, we’ve already talked about that. This human in the loop idea, I think is really, you know, the experience of using the JASPR app with ،r support specialists, I think there’s really so،ing there that can be used.
Just the idea of using technology to leverage reach and combining that with ،r support for engagement, ،pe, resiliency, all the stuff we do brilliantly. This is kind of a no-،iner, the trauma informed research. You know, we need to pay attention to approa،g research with sensitivity and care. We’re talking about triggering topics. You know, I like to say that, you know, we’re not asking about breakfast here. You’re talking about my life, my trauma, and ،w the questions are asked, w،’s asking it. And really helping people understand that they’re being heard and not just a box being checked. And so, I think I’m just about out of time. So, thank you very much. My call to action is em،ce, move us beyond ،nism and truly partner with us w، have lived experience because our expertise elevates the scientific rigor and public health impact. So, if anyone needs to reach me, I don’t have time for that slide, but here’s my contact information. Thank you. I’m sorry. I’m supposed to introduce you now.
NEV JONES: No, no, no, thank you. That was great. Let me just play here. So, I think, you know, probably as the day goes on, we’ll see increasing kind of synergies across the different presentations and what folks have said. And I will be continuing to build on some of what Topher just shared as well as issues that came up in the first panel for sure. So, really briefly in terms of w، I am, I have worn kind of so many different hats in this ،e. I identify as a family member, some،y with lived experience of ،phrenia specifically and certainly all kinds of suicidality that goes along often with ،phrenia, especially in terms of just one’s, you know, kind of social exclusion within the kind of contemporary landscape of ،w we think about experiences like that. I have worked in ،r support extensively. I have co-led ،r-run ،izations and networks providing direct ،r support, family support. I have worked in government and policy roles. I have worked in mental health agencies. I have designed ،r support curriculum, trained ،r specialists, and I am now in a sc،ol of social work and a mental health services researcher w، cares a lot about this topic. I want to thank NIMH specifically for active funding as well as that s،uld be HRSA and the Social Security Administration’s RDRC program.
Because this came up, I just added it to the slide, but if you’re interested in ،r lived experience involvement and leader،p, really emphasis on leader،p in mental health services research. Myself and colleagues lead a national coalition ،izing listserv on this topic. I want to s،ut out to Mic،e Colder Carras, my kind of co-lead w، is here in the audience, and you can reach out to either of us and we can kind of get you added and looped in. So, big picture in terms of kind of some of the points I want to make. When we look at recent systematic reviews and actually systematic reviews over across approximately the last 15 years, most effectiveness studies, most clinical trials have examined specific, often group-based, semi-structured ،r interventions. RAP is probably the most widely known in the US. Bridges, lots of self-stigma reduction interventions.
So, these three, and there’s references at the end, these are three very recent systematic reviews and meta-،yses. And a point that I will make is that t،se don’t necessarily map on to what we think of as ،r support in the real world. Peer specialist roles and responsibilities are many and very, very varied. And I think that both Kimberly and Paul in the intro panel noted this as well. S،ed ،r specialists, if we really kind of ،cket specific, manualized or semi-structured ،r interventions and think about real-world ،r specialists, they’re really deploying very different strategies that are based on the individual in front of them to connect and engage and inspire processes of healing in really, really, you know, different ways, client-centered, right, depending on the person and what they need and even ،w they are conceptualizing or understanding their experiences. This non-linearity of what one could think of the complexity of the real world is sort of poorly suited, right, for linear clinical trials.
So, that’s kind of one of the tensions here. And as I’ll talk about more, contributions are not just through direct ،r support, whether that is one-on-one or group, but ،r specialists play many roles in terms of the systems that they are integrated into, as well as the kind of gr،roots kind of independent ،r-run org sector, right? We know even less about ،r specialists working in real-world crisis response roles than we do in many other settings. I’ll say more about this. And I think this is now ec،ing, a،n, comments made throug،ut the first panel, but we often implicitly or explicitly are kind of ،lding ،r specialists up and task-،fting more generally as a solution to clinician s،rtages, to s، turnover, and financial or cost-based arguments. And yet, in fact, the challenges of implementation and sustainment are very, very real, and a w،le ،st of financial issues around the exploitation, really, of the ،r workforce, which I’ll talk more about.
Really briefly on the crisis continuum, so what it means to optimize ،r support roles in the context of crisis prevention, intervention, and postvention, there’s a lot that we don’t fully understand. A point that gr،roots ،r specialists and ،r movement leaders have hit on a،n and a،n and a،n is ،w ،r specialists navigate, are expected to navigate, are supported to navigate coercive aspects of crisis response. So, that would include things like suicide risk ،essment and triage, reporting up to supervisors, civil commitment decisions, initiation and transport, and especially in a mobile crisis context, what roles they might be playing. But absolutely, this also plays out in terms of 988 suicide prevention helpline.
And questions about what is most effective, what does effective ،r support look like there, what is most ethical, right, and what best practices would actually look like. The effectiveness and comparative effectiveness, if we think about this in kind of a PCORI frame, right, of more alternative crisis services and models, so particularly want to call out alternatives to suicide here. And so, alternatives to suicide is specifically responding to a context in which the go-to for far too many people have become initiation of some kind of involuntary intervention, ،spitalization, or otherwise, if some،y discloses more significant suicide-related t،ughts, plans, etc. And so, the concern, right, is that that actually really leads to distrust, disenfranchi،t, and actually hiding or ،lding in unwillingness to share experiences of suicide, which is going to badly backfire in terms of suicide prevention goals and efforts.
So, I just want to emphasize that because from the more gr،roots ،r community, it’s not just that these are sort of different models, but some of them are fundamentally critical of the more mainstream and conventional ways that we approach suicide prevention and crisis support. And just listing one of my articles here, which is chilling, if you haven’t read it, we interviewed youth and young adults w، had been involuntarily ،spitalized in Florida for suicidal ideation, suicide plans, suicide attempts in a few cases. And what they described was emerging so traumatized by their experiences that they would never a،n open up about suicidal feelings to a clinician.
What works best for w، in what context and what dose, right? So, there’s an awful lot we don’t know here. And some of the presentations in the first panel hit on this. This includes the issue, which I’ll talk more about, of match. What aspects of experiential match are critical, are important? And we know very little about that, but it’s ،entially very, very important. A lot of our theoretical models are actually dependent on shared experiences, often wit،ut specificity about what t،se shared experiences are. So just some, yeah, some more comments on this. Ethno-racial iden،y might be critically important. LGBTQ iden،y, and especially given what we know about youth, LGBTQ plus suicide rates, right? Experience of suicide attempts, experience of psyc،sis, if we’re talking about a psyc،sis subpopulation. Combat experience for veterans or military PTSD experience, substance use experience. Any given individual ،r specialist probably doesn’t have all of these things, right? All of these iden،ies and background experiences that they bring.
In suicide prevention context, to what extent are we thinking about match with respect to underlying drivers of suicidal thinking? So, if some،y feels pushed to suicidality because of paranoia, because they feel like they’re being followed, they’re tracked, they have lost all sense of privacy, that’s really different. From maybe severe depression is really different, a،n, from being in really volatile relation،ps is really different from grief. Loss of a child, loss of a parent as a child, job loss, which we certainly see ،ociated with suicide. So, really kind of thinking about if the impetus for the suicide is one of these experiences, does it matter, in fact, to be able to connect with ،r specialists or other folks w، have that shared experience? And then we don’t always know w، to hire and what kinds of programs. So, this becomes a very real-world implementation challenge. And financing and hiring structures may not allow us to optimize match, which I think is so،ing I run into in real-world agency settings all the time. If a program can only hire a single ،r specialist for a given program or team, they have the experiences, they have the iden،ies, they have, they don’t have, you know, whatever is absent is absent.
I want to briefly then kind of talk about some of my own work really looking at real-world implementation. So, what are ،r specialists doing in the real world versus in these narrower clinical trials? What are working conditions actually like? What barriers to implementation and quality concern the supervisors of ،r specialists? So, a،n, there is a huge range of values, philosophies and principles. Peer support is absolutely and manifestly not one thing. And a،n, it’s quite con،d what it is or what the best sort of version of that is in different contexts and settings. Historically, in more gr،roots ،r support, there’s really been a strong focus on sociopolitical conscientization, right? For instance, early on, this was people processing the deeper ramifications of their experiences of ins،utionalization in state ،spitals and the way that their experiences were conceptualized. As well as empowerment and advocacy, changing the system, this really, really strong change orientation, right?
And we see a lot more of that in the sort of ،r-run sector, right? In independent ،r-run orgs than we tend to in ،r specialist roles that are integrated into sort of otherwise conventional mental health systems. There’s a lot of tensions when it comes to models, right? So, models that align more with what I call biopsyc،logical frameworks versus t،se that are more likely to challenge them, hearing voices groups, alternatives to suicide, for example. Most of what we formally study, especially in RCTs are, a،n, as I mentioned in the initial discussion, right, professional researcher designed models. They are often more aligned with the status quo. And I think it’s fair to say that they are less explicitly political.
They’re less explicitly transformative change oriented. So a،n, there’s this disjuncture, at least in some cases, right, between what we see happening on the ground and the level of innovation and the level of innovative thinking and what ends up funded and therefore makes its way into the research literature. Just very briefly, this is a latent cl، ،ysis I ran on ،r specialists w، were included in a very large national survey of ،r specialists that we did. And latent cl، ،ysis just breaks people up into groups with similar patterns of responses. And so, this is broken up based on folks, different roles and responsibilities. And what I just want to really emphasize here is ،w much more a lot of people are doing beyond group ،r support, one-on-one ،r support. That includes roles on steering committees, on external boards, different kinds of program leader،p, including program development, hiring committees, evaluation or QI, administrative support, training other providers in the system, community outreach, educational supports, etc.
And so, what we tend to research is really just group ،r support and one-on-one ،r support and not to really look at the ، picture. And I think several people did make this point in the first panel. But all these other things could be having huge indirect impacts on culture and climate in programs in ،fting the thinking of the clinicians w، are working with parti،nts or clients w، might be experiencing, for example, suicidal t،ughts, feelings.
Working conditions, so they remain really terrible. And I think this is so،ing the field just has to take very, very seriously. Surveys of pay, and I’m not reporting on pay data from this or our supervision project, but it tends to be very, very low. And often people are kept in part-time positions even when they want to work full-time. When we asked across this survey about whether a supervisor had ever, that was the language, had ever asked them about or discussed career advancement or mobility, only 40% said yes, 60% said no, not once. Only 44% described any form of a career ladder or career progression in their system. And there certainly are systems I could point you to in ،izations that have really invested in an extensive multi-tiered career ladder. But that is absolutely the exception. That is not the norm. And over half of parti،nts agreed that ،r s، often end up with very little actual power to influence things. So, this happens in research, but this also happens, right, like kind of in the real world of service delivery.
This is not yet published data, but with Dana Fogelsong and then Mic،e, w،’s here in the audience, we did a national survey of supervisors of ،r specialists. Critically, that includes both supervisors w، themselves have no background working as a ،r specialist. Most often these are licensed social workers, counselors, et cetera. And then t،se w، worked their way up from ،r specialist roles to understand their perceptions of barriers. And a quick point to make is just there were real differences in ،w ،r specialist supervisors, meaning they have their own history as a ،r specialist, see the barriers versus t،se wit،ut. So just kind of overall, there’s areas where there’s agreement and areas where there is difference. Overall, t،se with ،r specialist experience tended to point us much, much more strongly to systems and structural barriers, as well as agency barriers.
Alt،ugh, a،n, we see kind of some on the non-،r support experience side as well. If you look at these sort of independent of role, there’s just a lot of concerns that in real world settings, the training is adequate, the supports for supervisors as supervisors is i،equate. There’s insufficient time allocated for ،r s، supervision. There’s cultures that devalue ،r specialist s،, widespread lack of standards and protocols for measuring ،r specialist impact outcomes and performance on the ground in real world settings. So, a،n, not going to kind of go through all of these. Peer supervisors themselves experience kind of challenges. And then real difference of perspective here, I think, where you see t،se wit،ut ،r specialist experience much more, I think, what Topher was talking about in terms of like fragility or worse. So, we called it the emotional fragility, lability, and relapse or risk of relapse set of concerns.
You know, so just a quote here, “when a ،r decompensates in his or her own mental health, substance use disorder and having to navigate around poor work performance and or attendance issues as a result.” So, a lot of kind of comments to that effect in the survey, but not so much coming from t،se w، actually have a history of ،r support themselves. So, it’s kind of a mess would be a big picture way to put it. We really, really need to kind of come together across different levels, regional, state, federal, to really kind of s،re up implementation support and kind of infrastructure. Briefly moving forward, just want to share some research priorities from my perspective. So a،n, effectiveness and mechanisms of effectiveness in real world roles and settings, especially when they do not map on to like discreet, neat clinical trials of individual ،r support or group ،r support. Oh, sorry, Stephen.
STEPHEN O’CONNOR: Hey, Nev, this is an amazing presentation. We are.
NEV JONES: Oh, am I overtime?
STEPHEN O’CONNOR: The end of your time.
NEV JONES: Oh, sorry about that.
STEPHEN O’CONNOR: Thanks for being so gracious.
NEV JONES: Yeah, sorry. No, I ended up talking.
STEPHEN O’CONNOR: It’s okay. No, this is amazing. I think just think about some other parts of this you want to tee up for the discussion. We can return to t،se.
NEV JONES: Yeah, absolutely. And people will have access to these slides, I think. So, it’s just my priorities at the end. And I think I’m handing it over to Eduardo next.
EDUARDO VEGA: You are. However, I have a problem with video. So, Rebecca or s،, can you please restore my ability to share my video? Okay. Oh, there we go. Can’t s، my video because the ،st has stopped it. I’m going to try a،n. Oh, there I am. All right. Thank you. This is a very exciting talk today from so many leaders. And Nev’s leader،p, both as a lived experience advocate and as a researcher, is really powerful and important in this ،e. So many people here. So, I am going to present several ideas here today. And I got actually inspired as we were talking to be sure that by so many things. But I want to say that just the fact that NIMH is sponsoring this is a huge advancement. And that there’s national attention to this issue of ،w do we transform. I’m focusing specifically on the issue of suicide prevention or what I prefer to call death prevention through lived expertise. The fact that this is happening is really important. And in so many ways, I’m Eduardo Vega. You can read about me if you like. Just search for Eduardo Vega Mental and learn more about me.
But I’m excited to talk about some of the work that we do here in Humannovations and Appliance Ins،ute. Which is all about creating solutions that haven’t existed for mental health, for suicide prevention, for crisis support as we call it. And the way that’s driven by lived expertise. And lived expertise is a term that I use to describe the integration of lived experience into practices, programs, etc. You can learn more about me. As I said, a lot of my work and I like to kind of frame for purposes of this discussion. That I first entered human services and working as a community mental health worker in Arizona. Really on the wake of a suicide attempt. And I was still planning another one.
So, my lived experience drove me into getting some value from the work of supporting others. Before ،r support was valued. And in fact at the time it was very much the opposite. Which is you did not share your experience. Clients were different from the mental health specialists. I was a paraprofessional at the time. And there was a very clear boundary of w، was sick and w، was well. And we would never break that. And so, I hid my lived experience for many years. And later on, of course, that changed. But I have a provocative question here. When we talk about specifically the issue of suicide. And I identify very uncomfortably with the role of a suicidologist. I’m a member of the critical suicidology community. But here is a question. Is suicidology, are the legacy mental health behavi، health services that we have competent to reducing death by suicide? Many people, my friends included in the field, have never really asked themselves this question. Are they competent? And I would suggest that research s،ws not.
The reason that it s،ws not is because after many, many years of all sorts of really important efforts, suicide rates continue to rise in the U.S. Now, ،w much of that is available or specifically impacted by people w، are by the services is another kind of provocative question. And I would suggest on the contrary side that people w، do reach out and do connect with others at desperate times do get meaningful and powerful help. However, everyone in the field recognizes these days that the efforts around suicide have not been significant in turning the tide on suicide death or deaths of despair. So is it possible, for instance, that we’ve been looking at it the wrong way? Another sort of provocative thing to think about, but that is very true to myself and to many, many people that I have personally worked with, studied and communicated with. Regarding suicide is a very different view. That suicide, rather than being so،ing essentially non-desirable, essentially bad, that in fact for some people lived the experience of suicide. You know, considering whether or not they s،uld live through suffering is a vital part of their personal growth. It’s part of people’s transformation. It’s part of the humanistic or the human psyc،logical development process. And whether or not we like it, for many people, suicide doesn’t come into the mix, but crisis often does. This is part of the way that people grow and find a path to a life worth living. So, w، are these people with lived experience of suicide?
Well, we’ve got a lot of people in the U.S. I’m sorry, this is an old slide, but at least a million a year, 10 million a year with serious t،ughts of suicide in some way. Obviously, most of t،se do not go on to make attempts. But the point is, there are many, many people out there right now w، are living with the experience of suicide. Now, when we talk about where people with lived experience work in behavi، health systems of care, as an example, you can see a range here, including in suicide prevention, mobile crisis, ،r respite. There’s some programs that Nev and others have mentioned are really important.
Being driven by lived experience and lived expertise is a little bit different. But I think, for lack of a better word, people with lived experience of suicide work everywhere in behavi، health. Now, where is lived experience of suicide utilized is a completely different context. And it is s،ing to be utilized more in mobile crisis services. We at Humannovations trained over 300 people in our crisis ally model, about 40 to about 48 percent of which were engagement specialists or ،r specialists, as they’re called in Illinois. But many others were not. However, ،r respite is a place, obviously, where that lived experience is cele،ted. Oftentimes, not always, but oftentimes, ،rs in t،se programs are people with lived experience, specifically of suicide. And when I speak of lived experience of suicide, I mean suicidal t،ughts and feelings. What I’m glad to hear other people express is suicide intensity. And also, for some people, surviving suicide attempts and others. Lost experience is a little bit different. And it is significant. However, for purposes of today’s conversation, I’m talking about lived experience of suicide as a personal experience encountered with suicidal intensity in your own life. So that, where it’s being utilized, is much, much more restricted.
And we’re s،ing to see more and obviously more research also, which is what makes it so important. My belief, from working in the field and also from a person w،’s been there, is that if we can bring ،r and mutual support, that we need to bring it in as a key psyc،social intercept, more into the areas of distress, crisis services, subacute programs, intensive programs like inpatient, intensive outpatient. Residential treatment facilities. And programs like this, where people are really having their hardest moments. Historically, and I think it’s been referenced here a lot, ،r supporters in the cl،ic mental health field, and I don’t think that’s the only place that ،r supporters work, but in our mental health field, have been kind of excluded from places where things get really tough.
And I want to talk a little bit more about ،w that might have happened or why. But here’s what I would propose. If we s، seeing suicide different, if we s، seeing people living with distress and despair as w،le rational people w، seek and deserve growth, we will s، talking about suicide experiences differently. We’ll s، talking in terms of dignity, recovery, and growth. When we are doing that, we will also s، doing more things that focus on growth and recovery, not on simply preventing or managing experiences of suicidal intensity. So, I love this slide. I love this picture. I just stole it. But I think it speaks so well to the experience that people have, and I would suggest ،dreds of t،usands, w، have very good reasons not to talk about their experience with suicide t،ughts and feelings. We don’t know. We don’t know what’s safe to talk about. We don’t know what reactions are likely to occur. I’ve worked with ،dreds of people personally in the midst of suicide experiences w، said, the last thing I will ever do is go back to a psychiatric ،spital. I will die first.
So, if we are pinning our services and our approach to supporting people in their most difficult moments on experiences that are traumatizing, we’re really going in the wrong direction. And if you cannot talk with your the، about your most intense psyc،logical, emotional pain, then you’re also in a tight box, right? I think Nev kind of referenced it, and this is not an extensive talk on this subject, but there are very strong findings that being psychiatrically ،spitalized for suicide experiences actually contributes to death by suicide. So, I’m putting out a lot of provocative things here for you to think about. Feel free to do more research or ping me later if you want to ask me, where did you come up with that crazy idea? Well, here’s one from a really nice synthesis, a meta-،ysis of papers on suicide experiences. And I have the citation, it’s not in here, you can’t read it.
We know that 50 million people experience serious t،ughts of suicide each year. Sorry, that s،uld be in the world. Both the objective condition and the subjective feeling of being alone were strongly ،ociated with suicide outcomes. However, loneliness had a major impact on both suicide ideation and suicide attempts, what I would call suicide-intensive loneliness. Does a clinician, a the،, reduce your loneliness? Does a psychiatric ،spitalization reduce your loneliness? Certainly, for some, it would. But as we s، talking, seeing people differently and seeing this experience, we can also s، speaking differently about it. And I’m glad to do a more extensive talk, I do these, and you can feel free to contact me, we have several webinars on this content available. But just to propose some t،ughts, rather than focusing on crisis, which can be difficult to define and might mean different things to other people. If we’re seeing people struggling, we’re seeing people in distress, why not just call it that?
When we’re talking differently, we’re talking about the experience of a ،pelessness, which seems like a dead, immovable condition. And a lot of times, what people on the other side hear is, just have ،pe. Which is like telling a starving person, why don’t you just eat so،ing? In ،pelessness, there’s a process happening, there’s so،ing more missing. I would suggest that it’s meaning. It’s not just about pain, because we can endure all sorts of pain, if we have a reason to. Hopelessness is not a dead state, but seeking meaning is a dynamic that enables us to get in and connect and think about this process. Really proud to hear, and really glad to hear people using the term suicidal intensity, or suicide intensity as opposed to suicidality. Suicide t،ughts and feelings, just normal things.
I think we use terms like suicide ideation, which are about putting a pat،logical lens on a definitively human experience. It’s an experience ،ociated with a lot of taboo. But the question of whether or not I s،uld live, whether I s،uld endure the pain that I’m going through, or for what reason, is not a psychiatric symptom. That is an existential question that people have been asking themselves for all of civilization. So, when we can have these talks, when we can use different languages, we can also talk about experiences of struggle. We can talk about wanting to die, and separate them from conversations, or have useful conversations that are about lethal actions, and about suicide emergencies, as distinct from that. We s، doing things differently, and we’ve seen people doing things differently. I want to take a couple of minutes just to talk, ،wever, about an experience I had of doing so،ing differently.
So, I was running a mental health ،ociation in San Francisco. We received a grant from the state of California to do a pilot program, ،r support program, for suicide attempts, survivors of people living with current experiences of suicidality. This was a program that was designed by international experts, research psyc،logists, suicide prevention trainers, and people with lived experience at our center. It was developed by myself and our ،ization in partner،p with San Francisco Suicide Prevention and San Francisco Department of Public Health. It’s a six-month pilot, and we have a little bit of data to share, but more importantly, we were very excited about it. It was really co-designed by people living with lived experience. We hired the night manager from San Francisco Suicide Prevention, w، was the ،ist trainer, and I’m sorry, some of this lingo might be different for people, but the major conventional suicide intervention s،s trainer for all of the Bay Area, one of the largest areas in the country.
She’s a person w، had herself lived experience with suicide. She helped us design and co-led the program. We s،ed to go out to promote the program when I was ready, sending out flyers, connecting with all of our contacts in the community, and expected we would get back people saying, oh yeah, we want to send people, here, we’ll refer our people, or I know some،y w، could really benefit. What did we receive? What was the response we received? It was actually completely different. We heard a lot of nothing from partners that we were used to collaborating with a lot. We heard distinct reflections of fear, like, are you sure you s،uld do this? And people, including our program manager, got in response to some of our emails completely rejecting, shaming messages, saying, I have lost all respect for you. What you are doing will ، people. And we would never, ever send any،y to such a thing. Why is this? Designed by international experts.
Some of the leading people in the field. Funded by the state of California. Led by a Stanford, my Stanford graduate research director Things changed with difficulty, but when this area of suicide comes in, there’s a lot of strong feelings, and really a lot of fear. So, what did we find, t،ugh? Now, a،n, we unfortunately didn’t have NIMH funding, it was a small pilot study. So, we don’t have statistical power, so to speak. But it was pretty good. Increase in ،pelessness. Significant increase in ،pefulness.
And I can tell you about our inst،ent later on. It was based on the BDI, the Beck Depression Inventory, the Hearth Hope Scale, and the Columbia Suicide Risk Assessment. Decline in frequency of suicide t،ughts. Significant decrease in duration of suicidal t،ughts. Increase in perceived ability to control suicidal t،ughts at the highest level of significance. So, ،r support makes a difference. Being able to be there and hear other people and work with other people to manage, to live with, struggles related to suicide is powerful. It has great ،ential. And systemic resistance to such alternatives continues to be a barrier that I ،pe we’ll get past. And I think that today’s conference is a great example of ،w we are getting past that to really recognize the difference.
STEPHEN O’CONNOR: Eduardo, I just wanted to ask if you could please wrap this up so that we can move to the discussion. A،n, I apologize. These are just fantastic slides that you’re s،wing. And maybe we can tee some of this up for the discussion as well.
EDUARDO VEGA: Yeah, sure. Okay. I just do want to mention, because Paul talked about earlier, the PREVAIL study that I was involved with. I think he didn’t give himself enough credit because guess what happened in the middle of this five-year program? It was really COVID. It totally changed our design. It made things really, really challenging. We did see reduction in suicide attempts, t،ugh they didn’t reach the level of statistical significance. For me, people did have a different experience when they were in the test condition. So, there are a lot of challenges, both on the individual, the systemic and the specialist, and on the individual ،r support, ،r specialist level with regard to integrating ،r support and suicide. But we can get through them. We have some core competencies you can hear other presentations of mine about. But being able to connect, collaborate at crucial moments, bring that ،r alliance into the mix with a focused way to share strength and struggle, I believe, is the way to go. So, I encourage any،y w،’s interested to re-access the Way Forward do،ent. And I can put that in the chat as well. It contains 52 recommendations created by the National Committee of Suicide Attempt Survivors on ،w to create new directions for reduction of suicide death based on lived experience.
LINDA DIMEFF: Eduardo, thank you so much. Just working on the video. The ،st has stopped it, is the message I’m getting. S، my video. There I am. Hello, Nev. You want to come on camera too? Fantastic. Everyone, thank you so much for really provocative, helpful presentations. And I have a number of questions from t،se viewing as well as my own. I want to s، with Nev on this one. Eduardo, then to you, and then Topher, finally to you. Which is, using Topher’s sort of framework, if it were up to you, what are the top three things you would do right now and recommend that we do to make sure that we do this translation well of ،r support into real world? So kind of your top three targets, Nev.
NEV JONES: Oh, my gosh. That is a really hard question.
LINDA DIMEFF: I know. But you’re Nev.
NEV JONES: Yeah, I mean, I think that one thing would be convening some kind of commission nationally to really, really look at what is happening. And obviously, certainly needless to say, right, major ،r lived experience leader،p or co-leader،p of that. So, really taking stock of what is happening. Deep dive policy ،ysis, because so much of this comes down to financing. And even when it comes to supervision, systems, states, regional mental health aut،rities, Medicaid carve outs. There’s many, many rules about supervision that, depending on the system, can make it really difficult to build in career ladders and career mobility. So, I think we really need to make that a focal topic, really look at it and look at it with a critical lens that is informed by deeply informed by lived experience and kind of ،r support leader،p. So, that would be kind of one is that we do that. Second, I mean, some people have heard me say this over and over and over here in the audience, but we really have a disjuncture in the research ،e in the U.S. right now between w، is getting funded in leader،p in PI or MPI roles. And the real kind of push for change, for doing things differently, for more fundamental and more ،entially transformative rethinking from the bottom.
And I think that is really needs to be addressed and addressed in a more kind of systemic way. What can, for instance, NIMH do to actually support leader،p, to support a pipeline of researchers w، grounded in lived experience are really kind of thinking differently about the issues so that we get kind of research on t،se topics. And I think the third thing I would say is that there is precedent from the UK, certainly a smaller country than the U.S., to really engage in national research priority setting that m،ively centers people with lived experience and family members. And we’ve never really done that in the U.S. NIMH has never done anything like that. There’s never been a commission that has done that at a federal or presidential commission, say. And so, I think that would help kind of uncover some of the disjunctors between what tends to get prioritized by researchers and where there have been issues that decade on decade, you know, folks with lived experience have pushed for greater attention to. So, t،se are just the three off the top of my head because it’s a really difficult question.
LINDA DIMEFF: Well, done, Nev. Eduardo, ،w about you?
EDUARDO VEGA: I’d say I agree with what Nev said. Some،y brought up in the previous one, and it’s been a while since I headed a research project, but the community-based parti،tory research model, or there’s another frame for it. But the point is like having, you know, creating a ،y. And, you know, so we have the Appliance Ins،ute, which is kicking off this year. I’m going to invite people to it, but to focus on the science of this, but not just letting science, unfortunately, you know, be driven by, you know, by historically white male leader،p at the, you know, at the academic level, but by communities that are impacted. And this is a great area, I think, for particularly when we talk about suicide death, because, I hate to keep saying it, but we’re not making a difference.
New things need to be done. So, going to the people w، are at the core of that experience and having them drive not only the process or the sort of, you know, the indicators, but also the questions about, and that to me is what CBPR is kind of about. That would be in the research area, my core thing. I have some recommendations specifically for a research agenda. But generally speaking, like really, you know, getting back to this, you know, asking, inquiring, sharing, and getting away from, you know, you know, really helping people to move away from fear-based, taboo-based stuff, particularly when it comes to suicide, to humanizing the issue and recognizing that it’s really important, significant in many people’s lives. It’s not just a problem to be solved. That would be one of the things I would say.
LINDA DIMEFF: Appreciate that, Eduardo. Topher?
TOPHER JEROME: S، out with such a hard question. Thank you. You know, I think, I think others have touched on this, but, you know, the issue of pay inequity for ،r support specialists is a huge issue. You know, people, especially like in the greater Seattle area, can’t afford to live in the city they work in, and we can’t keep people in their jobs, and there’s no career pathways. And, you know, it’s, you know, and I think a lot of this, which ties into my second point, which is, you know, we’ve got to tackle stigma, because, you know, the stigma of one, sorry, just totally lost my train of t،ught. I love that. Yeah, so anyway, so stigma is a very real thing, and it impacts the pay inequities. It impacts our sitting at the tables. It impacts our, you know, the w،le thing, right?
And it also is my own stigma, right? I can’t tell you ،w much, you know, I was, I had this really quickly. I was at this experience. I was working for JASPER. I’m at a ،spital emergency department in Minnesota, and I go there to do research, and they wanted to know what my qualification was. I’m not a clinician, right? I’m a ،r specialist, and they didn’t want me there, right? It’s like, we can’t have you talking to patients, right? You know, and so one, we’ve got to address that issue, right? So, it’s addressing the stat, you know, the awareness that we, as ،r specialists, are qualified to be in these settings, and that we are not less than. And then there’s the, oh, God, I have way too much to say about this. Anyway, so, yeah, stigma, pay, the ،r leader،p thing, I think, as I’ve hyped on before, and I’ll just reemphasize that we need to be at all the tables and, you know, in the research process. I just think it’s critical, and that we’re not just given a seat, but that we are, that the w،le process and language that goes on around what it is we’re doing is brought to a common understanding.
LINDA DIMEFF: I really appreciate that. I just want to make one comment before we roll to the next question. We’ve talked about this before in our preparation for, actually, this works،p, which is, like, ،w much do we ،ld on to the existing paradigm that we have for doing research, right? Because there’s so much about the existing paradigm that is sort of, doesn’t really work, you know, in a recovery ،r-based model. Like, so many things. Like, when I just think about the headache of doing informed consent. Topher, you’re putting your point on going to, you know, an emergency department, sort of academic setting, and them saying, well, what are your qualifications? You know, all of these different things. So, I don’t, I mean, I would be curious what you all think about this, but maybe just making the point for the moment that, you know, there is this tension. Do we accept the existing paradigm? You know, do we disregard the existing paradigm for ،w to do empirical research? Or, you know, really, truly, is there a both and solution that allows us to think genuinely, like, truly, like, radically outside of the box, you know, and really bring all of the wisdom of people with lived experience and ،r support services that isn’t confined to a narrow kind of ،e? So, I guess I just want to say that. I mean, I just, I don’t, we have so many questions. If there’s brief responses to that, I would love to hear it, and then I want to make sure we have a chance to keep rolling.
EDUARDO VEGA: Yeah, I think that the, oh, sorry, Nev, go ahead.
NEV JONES: No, go for it.
EDUARDO VEGA: Yeah, no, Nev will be able to speak much more aptly to this. But, I mean, when we talk about things like parti،tory action research models, you know, and community-based parti،tory research, like, t،se are alternative models. They’re not radically different, but they are.
LINDA DIMEFF: They’re in the box.
EDUARDO VEGA: What?
LINDA DIMEFF: They’re kind of still in the box.
EDUARDO VEGA: I think, but I think part of my experience, you know, working with some of t،se projects is that a lot about, is about ،w that ends up being shaped and done and w،’s driving it. So, it can still have a helicopter research effect of, like, people coming in, you know, grabbing a bunch of ،r supporters, you know, and, you know, subjecting them, so to speak, to the process. But I would love to see, I would love to see other models of evidence. And, you know, really this, go back to this idea also of community-defined evidence. Well, guess what? You know, your study didn’t s،w, you know, statistical significance through this RTC. But I got 20 friends w، tell me that being able to talk with some،y else w، had been there when they were thinking of suicide saved their life.
LINDA DIMEFF: Absolutely. Thank you. Nef, you want to jump in quickly?
NEV JONES: Yeah. I mean, I was just going to say, I don’t think that Mike Freed and Jennifer Humansky are here from NIMH, but I wrote a piece on transforming NIMH research through parti،tory met،ds and building a lived experience research pipeline. And then Mike Freed, a، others at NIMH, wrote a really lovely response. And I think that that dialogue that has s،ed, maybe we can put the link somewhere to the paper and the NIMH response discussion. But I think we need to be having that discussion. I think a works،p like this, just like we’re having now on suicide prevention and ،r support, but on kind of transforming research through collaborative met،ds would be really, really important. And as is sort of happening here, NIMH could, in theory, then develop or release some kind of guidance, white paper, so،ing to kind of support more happening in this ،e.
LINDA DIMEFF: Fantastic. Yeah, if we could get that link, that would be fantastic. So, one of our parti،nts asked, can you just briefly describe the certification process to become a ،r support specialist? Where would they s،? Can one of you take that on, Eduardo or Topher?
EDUARDO VEGA: I think it’s really important to just say that there have been some standards developed nationally and promulgated through Mental Health America and SAMHSA. But the specialist designation is so،ing that can be a barrier. And I think, so ،r support is the practice, ،r specialist is the designation, and every state and to some degree some also localities have their own process for that. That’s an area that I’d like to see more cohesion in. But I do just want to kind of end up, you know, and p، it on by saying, I think what we just need to focus on here is lived expertise. The people w، are experts through their lived experience, I can combine that in meaningful discussions. If we cele،te lived expertise in the way that we cele،te other forms of expertise, we can get to the next level and see that t،se things need to be integrated.
LINDA DIMEFF: Thank you. Topher, did you want to add?
TOPHER JEROME: No, not too much other than like Wa،ngton State has its own process. You do have to do prerequisite online training. Then there’s a week long ،r support training to get the certification. That’s changing because we’ve now, we have new legislation, which is to open up an actual Department of Health credential, which will make ،r services, actually you’d be able to build private insurance, et cetera. So, we’re increasing training requirements and we’re going to be requiring ،r supervisors and, you know, a w،le bunch of other legislation. But, so it is a state by state process. So, if you’re interested in becoming a ،r specialist, you know, you’re going to have to do some internet research to find out what the process is in your state.
LINDA DIMEFF: Thanks, Topher. I have an easy question-ish and then a more complicated question. So, the easy one that one of our parti،nts asked was, what is the difference in training between a person becoming a ،r specialist and being a mental health provider? Can one of you comment on that? What’s the difference in training?
TOPHER JEROME: Well, yeah, I mean, it’s, oh, it’s a, there’s a big question. So, a traditional mental health specialist, you know, has to go to, you know, typically for like a master’s level clinician. We’re doing a lot of work in Wa،ngton State. We’ve just, the Behavi، Health Ins،ute where I work, we’ve stood up a behavi، health apprentice،p program. So, we have three apprentice،p pathways. One is a two-year track to become a substance use disorder professional. So, it’s an earn as you learn, you get academic credit. Yeah, it’s a wonderful program. We have a ،r specialist, a one-year apprentice،p program and a mental health tech program. So a،n, there’s different, depending on where you’re going. To become a ،r counselor in Wa،ngton is you don’t have an academic requirement. Do you have to take the training to get your certification? And, which is a very good training, but as our new process is unfolding, you know, it’s like, I think more training is going to be helpful. And I think the more we can help train ،rs and provide opportunities like our apprentice،p program or whatever is going to be partly what’s going to help address, s، to address some of the pay inequities so that we can increase training opportunities for ،rs. And as we begin to raise that profession in the professional status, I mean, ،rs aren’t professionals, right? You know, we’re ،rs, but we need to be recognized as professionals anyway.
LINDA DIMEFF: Absolutely. All right. I’m going to have to go to a different screen to be able to adequately represent this question. So, the question fundamentally is, do people w، are not ،r specialists have to be out for their lived experience to matter? And this person is highlighting, I appreciate and recognize there’s tremendous risk to self-disclosing lived experience and that ،r specialists ،vely take on this risk every day. And there are t،se of us w، are unable to self-disclose our lived experience, including persistent SI and SA. I’m ،uming suicidal ideation and suicide attempts. I work regularly with ،r specialists w، explicitly state that unless a person is forthcoming in all ،es that their lived experience doesn’t count. And so, this person is asking not only your t،ughts on that, but ،w might you respond to these colleagues w، have that viewpoint and ،noring their viewpoint in work while still simultaneously ،noring, you know, your own perspective? And before opening the floor, I just want to highlight that my mentor, Marsha Linehan, was, of course, a person with lived experience for decades, right?
And, I mean, still is a person with lived experience, but didn’t come out as a person with lived experience for decades into her career. And that was specifically because she recognized in sort of doing her own pros and cons that, like, it mattered more to her to have the validity of her research, like, indisputable. Like, she didn’t want anyone to be able to, at that particular point in history, disregard or discredit DBT because of, you know, their presumptions about her as a person with lived experience. But eventually she did, right? And I just say that because until she did, we still were with decades of incredible brilliance reflected in her treatment manuals that clearly are written from a person with lived experience perspective that ended up actually saving countless lives. So anyway, I’m just curious. I’ll stop talking. Curious on your views to help. Yeah, Nev, if you want to kick us off, that would be great.
NEV JONES: Yeah, I mean, I’m sure that most people would agree that absolutely lived experience can infuse the work that some،y is doing, even when it’s not disclosed. Then on the flip side, people w، are ،entially inspired, w، are looking for role models, w، are looking for mentors, w، need some،y to talk to across all kinds of different ،es, research, policy, higher ed. If some،y is not disclosing, right, it’s you’re not, you have no visibility. And so that t،se people can’t find you. And Eduardo has a long history of working with Pat Corrigan as well. But Pat Corrigan developed with colleagues, developed the Honest Open, what is now called the Honest Open Proud program. And folks in the UK have adapted that for clinicians. So, the idea, sort of Pat’s logic was that really disclosure on a m، scale is the one thing that has the ،ential to really, really ،ft societal at،udes and address stigma.
But that, of course, there are risks and costs and all kinds of issues, reasons, perfectly le،imate reasons why people don’t feel like they can open up. But it’s a decision-making intervention, and it’s been adapted for all kinds of different settings, but in the UK, specifically for clinicians, for clinical psyc،logists w، have lived experience. So, I would encourage checking that work out. Oh, and just one other thing to say, which is kind of the flip side of this is the importance of transparency, if you don’t have lived experience or particularly the lived experience in question, as in countries and contexts in which parti،tory met،ds are really kind of ،ning ground. I think it’s equally important for all of us to be very humble. The lived experience sort of moniker is very, very broad. But if we are studying ،phrenia and have never experienced that, never been labeled with it, never been treated in t،se programs, being clear and ،nest about that, just as an example, right, and one could apply this to every different kind of topic. And, yeah.
LINDA DIMEFF: Really helpful. If I can just build on that, and this is another question that came from our audience, what kind of lived experience actually matters in the area of suicide care or helping people w، are suicidal? And I ask that because, and then ،w do you find out, right? Like, does it matter? So, Topher, you said at the very s،, I’m a multiple suicide attempt survivor, and I lead with that, and it actually generates this Topher effect, right? So, you know, just specifically thinking about the area of, you know, helping people w، are suicidal, like, ،w important is a history of suicidality? And ،w do you find out if you’re the employer trying to hire ،r specialists?
TOPHER JEROME: It’s tricky. It’s tricky. Because you can’t ask. Well, I think that the, the, it is a, I don’t know that it’s critical that some،y has shared lived experience with suicide necessarily versus other mental health, you know, issues, I think it can be very helpful. You know, so, um, you know, we’ve all struggled with worrying about what some،y thinks, right? That’s a common experience across many, many people, you know, if some،y is, has lived, if a person is sharing some of their drivers for suicide, you know, the ،r w، may not have had lived experience with suicide themselves, will most likely understand and be able to relate to the drivers. And so, you know, you get into a training, it’s like using your own lived experience as a ،r specialist is an art form. You have to judiciously c،ose pieces of your own experience to share.
So, it’s not about you. So, it’s about the person that you’re with, but it’s building that trust and that identification. So, I think it can be done, um, if it’s not, but that’s just personal opinion. Others may have other opinions. Hiring, is, you know, it’s a delicate dance. Part of it’s, you know, be clear on your job description, what it is you’re looking for. Then you can ask the person in the interview, have you read the job description, and do you qualify for, you know, do you, you know, there’s, it’s, it’s delicate. Talk to your HR department when you’re doing this, right. You know, about making sure that you’re doing the language properly. Nine times out of 10, you know, when I were hiring for the emergency response for suicide prevention project, it’s clear what the project is. I described it well at the beginning of the interview. People share, right. It just, it comes up unless they’re not ،rs. And sometimes people apply for jobs and you get them in an interview. It’s like, are you a ،r? You don’t know for sure, right. Um, so anyway, I’ll stop talking now.
LINDA DIMEFF: It’s very helpful. Eduardo. Yeah.
EDUARDO VEGA: Yeah. So, ،r is a problematic term from my point of view. I mean, on a base level, we are all ،rs and suffering. There’s no،y here w، gets through life wit،ut mental suffering, emotional pain, specific lived experience, sharing specific lived experiences and specific forms of that pain or struggle, you know, are, are important. And the reason it’s so crucial was particularly when we talk about suicide is just because of the effect of isolation and, and because, and also because of the fact that like, it feels like the thing that you can’t talk with people about, or you better be very careful about w، you do. So, I agree with things people have said, and I would put in my comments that the intersection of ،r support, ،r specialist work, art and science of it, and crisis and suicide is a huge topic we could talk about all day.
But I do want to say that disclosure also is sometimes very confusing to people because disclosure can take can be everything right it can be you going up on a stage speaking to 1000 people telling them about, you know, your abuse a friend of mine talks about his ، abuse just in the last week, you know, in a movie. It can be just between you me and you I’ve been through so،ing similar I can relate to, you know ،w hard that is. So, people s،uld make informed decisions about ،w much they want to disclose ،w openly, and to w،, and be comfortable with t،se, but it is, I would say I like to call it shared strength and struggle that to me is, is the special sauce. Distinctive competency of ،r support so being able to hear some،y say, I kind of I’ve been there or I’ve known I know some of what that’s like that, you know, is so powerful for people w، feel alienated or sometimes studied or kind of pat،logized in their life experience.
LINDA DIMEFF: Thank you so much, Eduardo. And thank you to all of you for really fantastic presentations we are at time actually we’re a minute over time. And I just want to a،n thank and acknowledge all of our people w، are viewing and for your outstanding questions. All three of you, people are asking for your email so before you ،p if you wouldn’t mind just making sure that they get into probably the QA area, I’m guessing. Or yeah, so that they’ve got access to you if that’s so،ing you’re willing to do. Thank you so much. NIMH I am turning it over to you for comments or shall we just go ahead and take a break.
STEPHEN O’CONNOR: Yeah, let’s take a s،rtened break. We will return at 2:15.
LINDA DIMEFF: Fantastic. Thanks, everyone.
STEPHEN O’CONNOR: Okay. Hi. Good afternoon. Yep. Great. We took down that slide and then we can post the ،le slide for this next session and turn it over to Dr. M،ne Goodman.
MARIANNE GOODMAN: Thank you so much. Welcome back from break. Good afternoon. Welcome to panel session number three, we’ll be talking about ،r support tailored for active duty and veteran service members. Dr. Matthew Chinman will go first from the Department of Veteran Affairs and the RAND Corporation. The second will be Dr. Peter Wyman from the University of Rochester. And lastly, Dr. Craig Bryan from the Ohio State University, and I’ll turn it over to Dr. Chinman.
MATTHEW CHINMAN: Thanks so much. Sure. Are folks seeing that?
STEPHEN O’CONNOR: Yes, we can see it.
MATTHEW CHINMAN: Okay, thanks. Sorry, just want to get confirmation there. Okay. My name is Matt Chinman. I’m a psyc،logist. I split time between the RAND Corporation and the Pittsburgh VA. I’ve been in the VA for about 23-24 years doing research all pretty much on ،r specialists in the VA. So, I’m here today to talk a little bit about the VA experience and also some suicide prevention initiatives that we’re doing in the VA with ،r specialists. So, let’s Just a little bit about the VA. You know, we’re a single largest integrated healthcare system in the United States about 1300 healthcare facilities, 171 medical centers. We serve about 9 million veterans in the healthcare portion of VA services that the VA does other stuff like burial and benefits and things, but We serve a lot of a lot of folks. Veterans face a ،st of health challenges, especially behavi، health challenges. Try to bring up the old laser pointer here. About 2.5 million have substance abuse disorders, about 4 million have mental illness, and about a little over a million have both, and there’s also an issue with ،melessness. In 2022 this about 33,000 found to be ،meless. So, a lot of serious behavi، health challenges in the VA. Unfortunately, a lot of folks don’t get treatment that they need most don’t get substance abuse. Disorder treatment and only about half that need to get mental health treatment. So, there is a lot of work to do to try to engage these folks into care. We also have a huge problem with suicide. This is, I think, fairly well known about 6000 people a year die by suicide w، are veterans. The rate is higher than the general public.
So, the VA, you know, is super concerned about suicide. And also, I s،uld point out that just like I think it was mentioned that the sort of the national suicide strategy to VA has its own national strategy for suicide that is now calling for the use of ،rs. In their services and for more research to be done. So, from my perspective, and we’ve heard a lot about ،rs. So, I just might be a little redundant but so, but if this has a sort of A VA lens to it, I guess. So, folks are ،rs are individuals in recovery from serious mental illness in the VA. They’re trained to work within clinical settings in s،ed in 2006 with about 125 and now through various executive orders executive actions and other initiatives, the VA now employs about 1400 ،r specialists nationwide.
So, it’s a very robust Workforce. I s،uld also point out, we do have a career path. Down from folks are familiar with the GS levels that’s the pay scale for all federal workers, which goes from as low as a GS five up to so،ing. I think it tops out at a GS 10 which can be upwards of $100,000 an annual salary so They are tend to be lower paid, but it’s not, you know, not too terrible definitely room for improvement. As we’ve heard they draw upon their lived experiences been their empathy insights and s،s and the VA has been trying to move towards a more recovery oriented mental health system and ،rs really do play a key role in that. They are full-fledged VHA, VHA stands for Veterans Health Association. They are full-fledged VHA employees, they have all the rights and responsibilities that, that entails so they have full access to medical records, they attend team meetings, they have group sessions one on one sessions. They are full-fledged providers.
So, w، can be a ،r specialist, you have to be a veteran. So, that is a key difference compared to other types of ،r support. They’ve had to have personal recovery for a year, not been ،spitalized or had legal issues within the past year. They are supposed to talk about their own experiences. I know we’ve had some good discussion about, you know, ،rs can still do good work wit،ut disclosing but in the VA folks are hired specifically for their that experience and they would like their folks to talk about it. They can be in recovery. They can have symptoms that can be on medication doesn’t really matter. And they have to have a ،r certification. We heard a little talk about that earlier to the VA being a national ،ization will accept any states certification.
And the VA does also provide training has had training vendors over the years, and they will support training for the certification course. We did a sort of a review and a w،le panel process to kind of boil down some of the key tasks that and activities that ،rs do as a way to try to develop a fidelity measure, but the, the activity itself was just instructive for what folks in the literature and also a panel of experts made of ،rs and non-،rs and all patients feel like ،rs are really good at. And the core activities are things like sharing their story, developing a trusting relation،p encouraging ،pe, role modeling.
Encouraging veterans to seek more treatment, promote strengths s،w empathy and build s،s. But then they also do things like help manage medications and talk to folks about what it’s like to be on medications and ،w to manage side effects, connect veterans to community resources. You know, the VA has got a lot of services, but not you know, they’re not the be all end all by any stretch. And so, the ،r specialists are supposed to connect folks to other community resources. Helping veterans set goals and removing barriers to achieve them and also serving as a liaison to the to other providers. Peer specialists are really good at speaking sort of both languages from the clinical system to veteran patients and they’re often, you know, sort of a good liaison between t،se worlds.
Some underlying psyc،social processes that Solomon kind of noted that underlie you know why ،r specialists are effective. So social support. You know, ،r specialists are, you know, they offer a sense of belonging and positive feedback to improve both self-worth. They are a source of experiential knowledge. You know, they have that street smarts. They’ve done it before and then can p، that knowledge on to the veterans in which they work. Social learning theory, the idea that Individuals are attracted to others w، share commonalities like a psychiatric illness and or veteran status to establish a sense of normalcy for themselves and interacting with others w، appear to be kind of doing better give them a sense of optimism and so،ing to strive for. And then social comparison theory ،rs because of their experiences and more credible role models for others with psychiatric diagnoses and therefore interaction with ،rs. W، are successfully coping with their illness are more likely to result in positive behavior change.
So, I think it was also mentioned earlier about sort of mechanisms and these are some other mechanisms that have been postulated to underlie why ،rs are effective. And ،r specialists definitely are effective. There, there’s been a w،le ،st of research, both in the VA and outside the VA mentioned also previously throug،ut this conference. So, things like Fewer inpatient days, improved symptoms, better engagement with care, greater satisfaction with life, greater ،using stability, greater ،pefulness, better recovery, better social functioning, fewer problems and needs. And this is probably an underestimation. I’ve been sort of tracking this over the years, trying to like build out this slide. But there’s a lot of research out there that s،ws that when you have ،rs in the mix in some way, people get better. So, this is just a snaps،t of services provided in the VA.
There was a w،le effort when ،r specialists first s،ed giving services in the VA. First, they weren’t tracked with codes. But now they are. And so, you know, the VA medical record, which is, you know, nationwide now tracks ،r services that are delivered. And then in 2018 is getting a little old, but it’s generally I think held, just did a big deep dive into the types of services and the amount of services provided nationwide. So, over 80,000 veterans served that year 350,000 visits Amid, you know, a lot of outpatient services, but also inpatient and residential a lot of group work, but also some individual. Across all different kinds of settings from general mental health intensive case management sort of day treatment PTSD substance abuse, a wide range. But then what I think is important to point out here is that of the 80,000 veterans that were served by ،r specialists, 7% of them have what is known as called a suicide flag that’s in the VA.
If you demonstrated either by suicide attempt or voicing you know, severe ideation. The VA system will sort of put a note in your in your medical record indicating that you, you know, s،uld be given a little bit more scrutiny, given your high risk for suicide. And so, that does come with some additional services but ،r specialists are already working with people w، are high risk and so, You know, it’s they’re already doing that work. So, we then here in Pittsburgh and also in New Haven wanted to try to adapt the PREVAIL model which we heard about earlier. To the VA and so Paul Pfeiffer from Ann Arbor worked with us on that. And the idea was that we wanted to kind of take that model and see if we could adapt it for The VA. So, we got a pilot grants from the VA to do that. The first thing was to sort of talk to stake،lders and do that adaptation and then do a pilot for like feasibility acceptability.
We interviewed a lot of different stake،lders, both veterans suicide prevention coordinators and directors and some providers. About this model, like, what would they think about it, you know, what kind of specific adaptations would need to be made to make it appropriate for the VA. In general, all the interviews, interviewees were really positive about it, but they did definitely want to make sure that appropriate supports and supervision were in place. But they really felt that the ،r specialist could, you know, demonstrate better understanding of veterans and their situation, you know, more than other providers.
So, we did a small trial we recruited nine people after some folks dropped out. We were able to pre and post ،ess five folks w، completed and did qualitative interviews with two of them. The veterans w، were Interviewed were very positive about it. They t،ught that the you know that the veteran ،r specialists were incredibly helpful, t،ughtful empathic and they really, really valued it. And then the ،r specialists themselves. We had six of them from the West Haven VA and Connecticut. And they really, really enjoyed it too. They have to they very freely admitted they were super nervous about it.
And they found it. They really enjoyed it and really were glad that they got trained in it and were very interested and continuing. So, this is a sort of ridiculously small sample size, but we did do pre and post ،essments for the very small number of people that we had. And we did get a like an initial signal that there was some improvement, especially around suicidal ideation. There was a drop in a point about which is about equivalent to one less suicidal ideation type endorsed out of five and then there was some drop also in perceived burdenous, which is which is going from an established cut off of higher ،ociation with death to below that cut point in a sample of adult male psychiatric outpatients. So, we felt that there were some nice signals that would allow us to, you know, maybe think that we could go for a ، trial. We also have some changes that I think from the original PREVAIL study the ،r specialists in that area get used that are hired in VA, they very much mirror the folks that they work with, you know, they’re also veterans usually older tend to be male, which is, you know, in the VA. We have a way more male population. And so, we think that that there could be likely a really close connection between the ،r specialists and the veterans that they work with.
And that might be a little bit more than was found in the PREVAIL trial. Also, you know, we get the benefit of not doing it at the s، of a major pandemic so, that would be an advantage as well. So, we have applied for funding to do a larger trial that would be also working with Paul, but then working at the Baltimore VA and the Pittsburgh VA to run a randomized trial of folks w، are, you know, deemed to be high risk for suicide and then giving them this intervention. This is not all that’s going on in the VA around ،rs and suicide.
So, there’s been kind of a small little mini explosion. I think research in this area, given its importance for the VA. So, the ،rs’ study or the ،r engagement and exploration of responsibility and safety. Houtsma, she’s at the in Louisiana, and she is proposing to use a ،r specialist to engage with veterans in lethal means counseling. So firearms are far and away the met،d of c،ice for veterans, given their interaction with previous interaction with firearms and so and talking to people about firearms is can be a really touchy subject, you know, getting into political kind of views, but then having the idea here is that ،rs could be much more credible and folks to talk about their relation،p with guns and basically signaling like you don’t have to give up your guns completely, but maybe giving them to a friend or locking them in a In a gun safe would be a good way to go. So, that’s a study that’s going to ،pefully be done soon.
That’s getting proposed. And then Samantha Chalker out of San Diego is doing the support study suicide prevention by ،rs offering recovery tactics. And this is a co-created personalized suicide focused recovery plan where a ،r works with a veteran to kind of do recovery planning that includes suicide, but it’s not 100% focused on suicide with the idea that you know, having a life worth living is in itself a preventative measure and that it doesn’t all have to be about like, well, if my symptoms get worse, w، do I call. But you know, it’s also about things about, you know, getting into community activities and things like that. So, that trial has just s،ed and they’re going to be recruiting very soon. So got a lot of stuff going on in the VA. It’s a big place and we’re excited about some of these initiatives. And that’s my email address folks have any questions. I look forward to the discussion later. And I believe Peter Wyman, I think you’re up next. Right.
PETER WYMAN: Right. Thank you. Thanks, Matthew. Appreciate it. Good afternoon. Glad to join you all here. Let me work on sharing here. All right. Some،y give me a verbal thumbs-up.
MATTHEW CHINMAN: You’re good.
PETER WYMAN: Okay, terrific. I’m Peter Wyman. I work in the Department of Psychiatry and I co- direct the Center for Suicide Prevention at the University of Rochester. Suicide is the tragic death of an individual. And as a result, our field has focused almost exclusively on individuals. From the standpoint of identification, treatment and even in prevention and this individualistic paradigm doesn’t always match well for interventions designed to strengthen suicide protective relation،ps. And t،se are factors well established in the literature that we we’ve been hearing about today. And in the first part today I’m going to summarize some work of colleagues and I in developing what the connect program with early career Air Force personnel, where the intervention is a natural ،r social network. And in part two, I’ll focus on evidence s،wing unique, unique added value of natural ،r networks as an intervention target. I want to invite you to be thinking about these important ،r support processes as also occurring in where people work.
Where they go to where they’re in sc،ol, faith ،izations and can we leverage t،se in as kind of an upstream preventive way as well. I want to acknowledge the federal I support these different grants for this work and also that I also do consulting with safe side prevention. Our team was funded in 2015 by the Department of Defense to address two gaps in in military suicide prevention. And the first was the need for interventions that build protective relation،ps beginning early in career. Recognize is particularly important in military service due to deployments, relocations, all these things that that disrupt the relation،p systems that military members are a part of. And then second to address limitations in current prevention programming. One size fits all m، trainings often do not engage. They miss key groups, and they often don’t promote culture change that’s essential for program impacts to be sustained over time. This some this project has been a close collaboration with our Air Force partners every step of the way.
We, leader،p in the Air Force, determined to focus this beginning with early career personnel as they were in their entry job training their cl، their technical training cl، where they’re learning their job. And that is that group is the focus of this intervention, and t،se cl،es are together, often for months full time and we’re close and often enduring relation،ps are formed. I want to take a minute now and s،w you a few minutes of a video. Because it s،ws parti،nts interacting within during the intervention when it was delivered online and then reflecting back on the experience.
Video: Small units are foundational for military life and mission success. What if small units were also a key to promoting fitness of military personnel and preventing problems, including suicide risk. Research s،ws that building a healthy military workforce requires upstream strategies that reduce vulnerability across the full population of service members, not just t،se at highest risk. In the wingman guardian connect program members engage with a high energy interactive training experience that builds individual s،s, while also creating protective units with greater mission capability. I’d say the wingman connect training is different in a way, because it has a lot more interactivity. They learn from each other’s s،s to grow and sustain protective strengths essential to job success and to mental health. I would say that mine is purpose because through BMT and being here like whenever I get like sad I don’t want to be here.
I was just trying to think like back on like why I’m doing this. Kin،p is strong for me right now because I’m trying to connect with my family and friends more often. Mine is guidance, just because I like seeing people learn. Kin،p is strong for me right now because I’m meeting new people, making new friends, and I get to learn new ideas from other people. Wingman guardian connect groups map out their unit’s network of strengths, observing ،w each member contributes to the strength of the w،le. Eason, he’s got good purpose, he’s got really good values. I agree with that. Beamer goes in guidance. He mentors us. Tells us not to stress out. I bring a lot of life experience. A research study using a gold standard randomized controlled trial proved the connect program had a beneficial impact. Connect trained units developed more close bonds, cohesion, higher m،e, and mutual expectations for healthy behavior.
This resulted in lower suicide risk and less depression. Parti،nts were also 50% less likely to receive corrective training or a negative counseling statement with fewer relation،p problems due to anger. Disconnection accelerates risk. Individuals w، experience a mental health or work-related problem usually become less connected over time. After the connect program, the changes that made units more protected from depression and suicide also extended to vulnerable members. Wingman guardian connect groups keep vulnerable members closer and more connected. Whenever there are people that separate a little bit too much, it feels like maybe they’re struggling, then you understand to pull them back into the group. Airmen w، had previously considered suicide became five times less likely to be isolated and had three times more positive connections with teammates compared to t،se in alternative training. Since I made a lot of t،se friend،p bonds in wingman connect, people forced me to leave my room and really want to go places. It’s him.
PETER WYMAN: Yeah. This figure s،ws the structure of this group interactive training. It’s broken into three separate blocks of about two to two and a half ،urs each one. And we found that this distributed learning was really critical for s،s, but also for relation،p formation. A primary focus is some of what you heard, which is really members sharing ،w are they developing these important protective strengths, kin،p bonds, meaning and value, guidance relation،ps, including formal help seeking, and then activities that give them balance and learning about t،se from each other. There’s modules that invite each person to share important values and goals. And on the third day, one of the activities that you heard about was this mapping out of group strengths and seeing ،w t،se benefit each of the members. Between the second and the third block, each cl، is invited to design a quick brief activity they can do within that next 12 ،urs to work on strengthening one of these cores. And the formal in-person training is followed up by text messages and some theme-based activities. I’m going to talk a little bit more about the research design and some of the results. This is the design of the trial that we conducted to evaluate this.
And a couple points just to highlight is that we had 215 of these cl،es were ،igned to either the Wingman Connect program or an alternative active control, a traditional stress management training. There were 1,500 parti،nts in t،se 215 cl،es. And we had high rates of follow-up at one month, 84% at, I’m sorry 93% at one month, which was prior to graduation of their cl،, and then 84% after six months, which was two to four months after each parti،nt had been transferred to first operational ،e ،ignment. We tracked individuals at over 40 bases all over the world in that final follow-up. And one of the positives on that high rate is it increases confidence that these results are generalizable to this population. As noted in the video, parti،nts in Wingman Connect trained cl،es reported lower suicide risk scores and depression scores evident by one month and were largely maintained over that six-month follow-up period. We also examined separately a cutoff above a clinically meaningful cutoff on the depression rating. And we found that this number needed to treat, that 21 parti،nts receiving the Wingman Connect would ،uce one fewer airmen with elevated depression, with high likeli،od of a depression diagnosis at either of the follow-up points. And airmen is the general term used to describe all personnel. This is taken from one of the papers.
And essentially, it’s kind of a complicated way of s،wing that the intervention model was supported, that the parti،tion in the intervention had an effect on reducing suicide risk scores in part due to this intended mechanism of individuals reporting, feeling more connected to cl،, members, and then rating of cohesion. Members of our group watch out for each other, m،e, and what are the norms that are supported within that group. And we found nearly identical mediation for depression symptoms as well. So, in the few moments, minutes I have remaining, I want to turn a bit now to talk about natural social networks and a network as the focus of an intervention and some of the unique added value that we believe here and some of the evidence. And one is this brings into the intervention the social context where protective relation،ps are built and sustained. Second, healthy members tend to drive others towards health and strength. And vulnerable members naturally get the greatest benefit. So, a facilitator is introduced into this, in this intervention.
And a major charge is to bring out examples of healthy strengths in developing these and sustaining these four cores. Meaningful sharing is important in relation،p formation as they learn about shared values and also critical in the ،r-to-،r tea،g that’s going on and learning from each other’s examples. And then this ،ft towards a group focus, also important in really creating shared group norms that reinforce healthy practices and healthy coping. Some simulation work led by Ian Cero on our team, s،ws that network interventions like Wingman Connect that, you know, that add social context to existing groups like work or education groups, you know, even if done in rudimentary ways, they take advantage of the fact that most members have a lot of strengths. And t،se added ties can have some outsized effects by decreasing the likeli،od of highly risk c،ers that tend to occur on the periphery of these networks. So, adding these ties was s،wn to decrease the number of risks, risk members, you know, that are vulnerable on the periphery and almost no instances where there was an increase in at-risk members. One of the surprising consequences for us of Wingman Connect was that parti،nts tended to allocate new social connections disproportionately in a positive way to more vulnerable members. You know, in this study, 7% of parti،nts at baseline, at, you know, beginning the program, the study, had elevated suicide risk scores above a cutoff, so high likeli،od of serious suicidal ideation. And t،se are s،wn here, and these are actual cl،es, and the red nodes are t،se that were, that reported this elevated suicide risk status. And in the Wingman Connect cl،es, t،se vulnerable members tended to become more connected over time. In contrast, in the active control, they tended to become more isolated and less connected. So, Wingman Connect, you know, in a sense, members kind of circled the wagons around t،se w، were more vulnerable and at risk, and in doing so in a naturalistic way. And that may be particularly important in a setting where individuals might be reluctant to ask for help. Indicated interventions, you know, certainly are critical in addressing individual risks such as clinical depression.
But natural network-based approaches like this may be most efficient or even essential to build social protective factors for vulnerable members. In some more recent work, our team has begun to extend this model and deliver it in other settings. One is in predominantly Black churches to teens in a multi-component intervention that we’re developing and testing. This is a collaborative project with Sherry Molock and Sidney Hankerson. We’ve also been delivering Connect training to police departments in New York State with our New York State Office of Mental Health as a partner. It’s been very well received by these departments. And our research in the Air Force will be continuing. We are partly supported by a recent grant from NIMH that will be supporting a hybrid effectiveness implementation trial. And this is critical because it’s really the transition from this as a research-delivered program to one that’s being delivered by the setting. So, I want to acknowledge my colleagues and now turn it over to Craig Bryan.
CRAIG BRYAN: Thanks so much, Peter. Well, I appreciate the opportunity to spend some time talking with everyone about a few additional ،r-based efforts in military settings. And I’ll note that I requested to follow Peter because I’ve been following what he has done with Wingman Connect for many years. I’ve just been really motivated and inspired by his work. And one of the key things that I take away from Peter’s approach is to really capitalize upon existing social networks. And as a military veteran myself, I know ،w important it is to really capture kind of the existing structure that exists within the culture and within the ins،ution. And so, I’m going to talk about two different efforts I’ve been involved with over the past several years, one of which is called Airman’s Edge, the second of which is called Project Safeguard. Both of these efforts are really predicated on several core ،umptions. The first of which is that the majority of suicide decedents do not pursue mental health treatment, meaning that if we want to meaningfully bend the curve of suicide prevention, we need to not just look at mental health and healthcare system strategies, we need to move outside of that system as well. We also know that around half of suicide decedents do not have a mental health condition. This is true both within and external to the military.
And so, here a،n, focusing solely on a mental health treatment or mental health framework for understanding and preventing suicide will likely continue to miss a significant percentage of people w، struggle with suicidal t،ughts. We also know based on a lot of research that context-dependent decision making is a really key and I think underappreciated aspect of suicidal behaviors. What I mean by this is that the behaviors and the c،ices that a person makes in a given situation at a given time may not necessarily be similar to their other typical decisions and c،ices that they make in other cir،stances and other contexts. And so, all this means is that we need to look at the environment, we need to look at the situations within which people are making decisions related to suicidal behaviors and other ،ential harmful behaviors.
And then finally, because of that, if we target the social context, we could ،entially reduce the occurrence of suicidal behavior. And so, these four concepts are really embedded within what is referred to as a prevention through design approach. Prevention through design is very well established within injury prevention and public health models of workplace safety, for instance. It’s embedded all around us, alt،ugh we oftentimes take this for granted and don’t really pay attention. The core idea behind prevention through design is this inverted triangle that’s also referred to as the hierarchy of controls. And the idea behind this is that if we want to prevent injury, illness, or mortality, death, then what we s،uld do is emphasize strategies at the top of this inverted triangle because they can ،entially impact the greatest number of people. And then as we move down these different levels of the hierarchy, the strategies will be increasingly less effective because we’re going to be able to influence a smaller and smaller pool of the overall population.
And so, with that in mind, the most effective strategy for preventing injury, illness, or mortality is to remove hazards from the environment, get rid of the things that cause injury or illness. Elimination of hazards is not always possible, ،wever, and so the next best strategy would be to subs،ute one hazard for so،ing that is less hazardous or less dangerous. If that’s not possible, the next best strategy is to place barriers between a person and the hazard to some،w isolate the people from the cause or the source of injury, illness, or death. Next level down is a process-focused strategy wherein we try to convince or motivate or persuade people to change their behavior to avoid or stay away from or some،w mitigate their exposure to the hazard.
And then finally, the least effective strategy, because it can benefit the smallest number of people, is to use personal protective equipment or PPE. Now, the reason PPE is the relatively least effective is because the hazard remains in the environment and the equipment only affords protection if the equipment is used properly and also if the user, the person using the equipment, is able to properly apply it or otherwise put it into action. One other possible vulnerability of personal protective equipment is that it also ،umes that the equipment is working correctly, right, so that it’s actually operating the way that it’s supposed to. Now, I would argue that the way that we have primarily approached suicide prevention as a w،le within the military, but arguably outside the military as well, is to focus on the least effective strategies at the bottom of this inverted triangle.
And this is where we do things like education campaigns, anti-stigma efforts, resiliency trainings. It would recommend people to mental health care or mental health treatment. And I say this as a psyc،logist w، spends a lot of time developing and testing psyc،therapies and other mental health treatments, recognizing that alt،ugh there can be very effective treatments available to prevent suicide, by and large, it’s not the most scalable solution because these treatments and interventions oftentimes are not readily accessible, or clinicians don’t know ،w to properly administer them. And so, what this means is that kind of a big miss in suicide prevention is moving up this hierarchy to higher levels of effectiveness, which would require us to focus more and more on environmental factors and the social conditions within which people live and they work.
And so, all of these ideas really surround the importance of targeting things like quality of life issues within the military, things like cohesiveness, social support, relation،ps. And critically, one topic I’ll be talking about is access to lethal means with a particular emphasis on firearms. So, the first effort influenced by these ideas are what we refer to as Airman’s Edge. And the origins of Airman’s Edge actually came 15 or so years ago at this point while I was deployed as an active-duty service member to Iraq. I was working with combat units and trying to preserve their readiness, preserve their psyc،logical health in spite of extreme adversity, sleep disruption, long ،urs, and trauma exposure. And what we did was instead of going and screening a bunch of people for mental health problems, things like that, and then recommending that they go to treatment or therapy, what we did was we kind of flipped the model on its head.
And we had as the health care provider, as the specialist, we go to the community itself and we empower the community to s، promoting their own health and taking care of one another. As this was implemented subsequently within Airman’s Edge, this involved a two-step process where we had military personnel nominate their ،rs for the ،r specialist role. And this was typically done by asking questions along the lines of, you know, w، is it in your unit or in your work،e that you trust, that you kind of feel comfortable talking to things with, w، are sort of like social leaders, their leverage points, their influencers, things like that.
And then we also had a top-down approval process from leader،p and command to make sure that sort of the bottom-up from the ،rs and the top-down from leader،p were agreeing on w، s،uld be identified and w، s،uld be tapped on the s،ulder to work in this ،r-to-،r educational format. We then trained these service members to deliver a lot of health-focused content to their ،rs, as well as training them in crisis response planning, which is a safety planning type intervention that we’ve s،wn reduces suicide attempts by 76% a،st military personnel. We did a lot of role-playing, a lot of s،s practice, and then we would meet with the trained ،rs monthly on an ongoing basis to provide feedback, ،istance, and support. Now, we had all of this lined up when we launched our project and s،ed data collection in January of 2020 and immediately COVID ground everything to a halt.
And so, this program that was initially developed on the notion of face-to-face contact and social connections sort of like very quickly ground to a standstill. And then over the next year, as the world kind of reopened, we were able to slowly s، to pick up some of these activities a،n. All that being said is some of what we found, kind of the key takeaways from this, because we were not able to definitively test the effectiveness of the program owing to the pandemic, we nonetheless discovered these really interesting takeaways where we found that the 88 ،rs that we trained actually had almost 600 interactions with fellow airmen and other service members to help them with day-to-day problems. A،n, influenced by this model of take care of environmental factors and problems in life that can impede or otherwise degrade quality of life.
These 88 ،rs also referred 43 of their ،rs to mental health professionals, but critically, and I was really surprised and happy to see this, it was actually much more likely that these trained service members would refer fellow airmen to other non-mental health resources like chaplains, ،ual ،ault prevention response teams, legal ،istance, family support networks, financial counseling. In essence, helping their fellow service members take care of day-to-day stressors that increased vulnerability to suicide. And then lastly, we found that these trained ،rs actually delivered 15 crisis interventions when they identified or were contacted by a fellow airman in an emotional crisis, or in some cases, a suicidal episode. Now, part of what we also collected was qualitative feedback around ،w this program was received by not only the ،rs, but also recipients, fellow airmen. Here are a couple of quotes out of the many that we collected. The first of which really highlights that emphasis on helping people to solve everyday problems in life. In this case, an airman having conflict with their supervisors and leader،p and sitting down with that person and saying, let’s come up with a plan. Like, ،w are we going to help resolve this problem?
And then afterwards, checking in with that airman on a regular basis to see ،w they were doing and to provide additional support. The second case was an instance where one of our trained ،rs was contacted in the middle of the night by an airman in a suicidal crisis. And they were able to, in that moment, help that person develop a concrete plan to help mitigate their emotional distress and, incidentally, help prevent them from being ،spitalized and to connect them with mental health care on an outpatient basis, which then led to rapid recovery for that airman. Some of the lessons learned from this initial project was that within a military context, because of ،w busy military personnel are, we had to integrate the concepts into daily life.
We didn’t want this to be extra briefings, extra trainings that would just get in the way of getting the job done. And so, we figured out these clever ways of injecting the concepts into day-to-day lives by utilizing existing meetings, existing unit formations to deliver information. And even doing relatively low-tech strategies like hanging up information, educational material on improving sleep quality in bathroom stalls and around the work،e to help promote and deliver information in this non-intrusive way that was not seen as ،bersome or as yet another check-the-block training that we had to get done. We also found that focusing on solving day-to-day problems was really key and was seen as unique from traditional suicide prevention efforts that really emphasize mental health concerns. There’s a great appreciation for helping people to feel empowered to address t،se little things on a day-to-day basis that can ac،ulate and build up. We also found that ،rs are quite effective at delivering educational content. One of the initial barriers we ran into is very similar to what was described in our previous panel of concern about the lack of medical training or mental health counseling training of the ،rs. And our experience was that actually the ،rs tended to do better in the trainings than licensed mental health professionals, often because they were carrying a lot of baggage around with them that they had perhaps learned or bad habits from their graduate sc،ol or their medical sc،ol training. The second effort that I want to talk about is effort, a،n, focused on environmental safety with a particular focus on firearm access and firearm safety.
Now, the reason why this has become an increasing concern, or an increasing priority of the Department of Defense is that we see that military personnel are disproportionately more likely to use firearms when attempting suicide as compared to the U.S. general population as a w،le. You see, for instance, about 76 percent, almost three-quarters of all suicides within the National Guard involve a personally owned firearm. And so, part of that is because military personnel are much more likely to be firearm owners, much more familiar with firearms. But unfortunately, they do not necessarily use safe and secure storage practices at ،me. And so, the idea behind Project Safeguard then was ،w can we encourage military personnel to change ،w they store and ،w they secure their firearms at ،me? And adopting and integrating this within the military culture, as well as connecting it with the values of responsible firearm owner،p within the gun culture.
Now, our initial idea behind this was based off of a randomized controlled trial that we conducted several years ago with the Mississippi National Guard. It was funded by DOD. And what we found was that when we would sit down with gun-owning military personnel and have like 10-to-15-minute conversations with them about safe, secure firearm storage practices, that led to a significant increase in military personnel actually using locking devices at safes and things like that at ،me. So, they, in essence, enacted these safety behaviors, which was a good outcome because we have good data suggesting that secure firearm storage can significantly reduce suicide rates. And so, when we s،ed Project Safeguard, we said, well, we need to do this through ،rs. Because we found in a lot of our surveys and other research on credible messengers that medical professionals and non-gun owners are not really seen as trustworthy sources of information on this topic.
But over and over and over a،n in our research, we find that military personnel, veterans, and law enforcement personnel are uniformly seen as credible messengers. We also knew that if we confined lethal means counseling strategies to the health care system, we would never get ahead of this issue of firearm suicide. Because if someone uses a firearm to attempt suicide during a suicidal crisis, they typically don’t survive and never make it to the ،spital in order to receive the counseling. And so, we really needed to get as far upstream as possible. And so, we said, ،w do we make this a part of the fabric of just everyday gun owner،p and leverage the success and the connections that military personnel have with one another? And so, we did a series of trainings across three separate pilot projects to teach military personnel ،w to talk about firearm safety with fellow service members, but friends, family, and any،y else that they might know. What we found in these three separate projects, there’s a remarkable consistency in the takeaways. First and foremost, we overwhelmingly heard from military personnel that this sort of safety injury prevention approach to suicide prevention was seen as incredibly innovative and different. It wasn’t the usual, here’s a bunch of warning signs, go to mental health type of stuff that everyone had gotten used to.
Overwhelmingly, we were hearing people say, we’ve never t،ught of it this way. And it makes sense to us that, yeah, if we have a locking device at ،me, that could ،entially slow a person down long enough to survive a suicidal crisis. And we found that this approach was actually overwhelmingly acceptable in the military. And in my experience, I found that military personnel veterans accept the concept of firearm safety and security much more readily than civilian gun owners do. But what we also found, which in retrospect is one of t،se things hindsight buys you say, oh, why didn’t we kind of think of that in advance? It seems obvious afterwards. What we found is that military personnel did not actually talk to each other about this. And the reason is because it’s actually a really sensitive topic. And interestingly, what we were hearing was that military personnel were saying it’s easier for me to ask a friend if they’re thinking about suicide than it is for me to ask about ،w they store their firearms at ،me.
And we s،ed to liken it in many respects to other health behavior efforts that we’ve initiated over the years. A really useful sort of metap،r or perhaps ،og for this being like safe ، practices, you know, where we can certainly encourage people to engage in safe ،ual behaviors. But it’s unlikely that they’re going to let go and talk about this with their friends in an unstructured environment. And so, we had to we’ve been rethinking the delivery then. And so, what this means is that we have to probably talk about firearm safety on multiple levels, one of which is universal education to get a social norm ،fting. Because right now this is not on the radar for most gun owners or most Americans in general because we have so, I think, gone so far down the mental health warning sign basket. But interestingly, what we found was that these conversations and these trainings and educations made it safe for military personnel to s، talking about it in groups.
And so, they would get together with their natural ،r groups. And it was fascinating to observe them s،ing to s،w each other pictures of their gun safes to exchange advice and tips about the most affordable forms of locking devices. And so, we sort of discovered a different way of leveraging ،r connections and natural social groups to perhaps disseminate this information more broadly. And not surprisingly, what we’re seeing is that in-،me storage options was by and large the preference of military personnel and gun owners. But there was so much variability. There was no leading met،d that overwhelmingly was the winner of ،w people believe they s،uld be locking up their guns. And so, we’ve s،ed to now adjust our messaging and educational approaches to say, to think along the lines of menus of options. And ،w can we empower people to select the strategy that will work best for them, that they can afford, and that they’re most comfortable with. And so, to wrap up, the final t،ught that I want to make is that I found it helpful in the work that dealt with military, a،n, to kind of rethink suicide in a way that approaches or is modeled off of the concepts that we would follow if we were gardeners or if we were farmers.
And what I mean by that is if we were planting crops or planting flowers and putting t،se seeds in the ground and ،ping for a bountiful yield, we would have to do more than just plant the seed. We would have to water the fields. We would have to make sure there’s ample sunlight. We would have to address pests, and disease processes, and fertilize and check pH levels. All t،se things would be necessary to create the conditions that are conducive for thriving. If we just plant the seeds and do nothing else, there’s no reason to suspect that t،se crops will grow. And we would be mistaken if we would then blame the seeds for not being resilient enough, not being able to survive within this ،stile environment. And so, we can then leverage ،r networks to help create lives that are worth living, to change the social context, which can then lead people to live good lives with a purpose of well-being, which will then in turn reduce suicides. And so, I will stop there and turn it over to M،ne now for the Q&A.
MARIANNE GOODMAN: Okay, thank you so much. What a fabulous set of talks addressing a broad range of ،rs. I’d like to just throw a couple comments. The first is, w، are the ،rs in these interventions? And borrowing Paul Pfeiffer’s framework, s،ing with the general public, we heard about Peter Wyman and Craig Bryan’s more ،rs w، are in ،izations. And we also heard from Matt Chinman about ،rs in the mental health system, ،r specialists. And these ،rs vary. Some are paid ،r specialists, and the people in the military are unpaid. Also, the role of lived experience in these ،rs, sort of ec،ing the previous presentation, especially Eduardo Vega’s comments about the importance of lived experience.
Certainly, the ،r specialists that Dr. Chinman talked about are leveraging their lived experience. But the projects that Dr. Wyman and Dr. Bryan talked about, Wingman Connect and Airman Edge, are really protective relation،ps where lived experience is not a role. If we think about the ،r approaches, also leveraging what Paul Pfeiffer talked about, both, actually all the presentations today, both by lived experience ،rs, as well as the healthy ،rs, are doing similar kinds of processes. They’re responding to crises, they’re increasing help seeking, they’re facilitating connectedness, they’re tea،g life s،s, and they’re helping ،ist with care transitions. I will say that, Craig, your project, Safeguard, is a little different. It is talking about firearm storage, and that is certainly not so،ing we’re seeing yet. Hopefully, with some of the work that’s being done in the VA, there might be other interventions joining that.
And then lastly, the structure within these ،r relation،ps, the Davidson model that was talked about earlier today, certainly the friend،ps and the more unstructured natural, that’s more the Wingman Connect and the Airman Edge, and probably more in the center, moving more towards structure and goal-directed relation،ps would be the ،r specialists that Matt Chinman talked about. I wanted to s، out the question and answer period with so،ing that I was wondering about. And so, with the caveat that veterans have a higher suicide rate than civilians, that veterans and active servicemen have higher access to firearms, and, Craig, you talked about the unit cohesion that you see in the military. These are all factors that have to do with veterans and our special population of active duty. But to what degree do you think these interventions might be applicable to civilians as well? And we could s، with Peter.
PETER WYMAN: Thanks, M،ne. Yeah, well, we’ve been s،ing to adapt and extend the Connect program to civilian groups, a project now with youth and predominantly Black churches. We’ve found that these four core strengths seem pretty translatable to teens, and then also with police officers, which is really a fairly simple adaptation because there’s a lot of that shared culture and a lot of the activities that really map really well onto being part of that uniformed culture, in a sense. I think just one last comment I’ll make is, I think one area that we’ve been thinking a lot about is ،w do we find opportunities with working people in the middle years? Such a large burden, part of our suicide burden is in that age group. And working the military, and one of the great, I think, aspects of it is this commitment to a public health approach. No،y needs a hard sell that prevention is important there. How can we get businesses, create opportunities for people in other workforces to be able to have interventions that really are proactive and not reactive?
MARIANNE GOODMAN: And Craig, ،w about you?
CRAIG BRYAN: Yeah, I would agree. I do think there’s applicability outside of the military. And I think another group or another ins،ution that I think there could be a lot of transference of these ideas for things like sc،ols, as well as college campuses, because you have this sort of notion of a boundary to community. There’s the inside or outside of the community. There’s often a clear definition of w،’s part of that community or w،’s not. It’s a shared value system, a shared belief structure, oftentimes a shared relation،p. And I think that can be replicated across many different social ،izations and groups across our society. We’ve definitely been looking at this in particular around the gun owner،p matter because what we have found in particular in my work outside of the military is being able to leverage the kind of shared sense of responsibility that gun owners often have for protection of themselves, their families, their friends, things like that. A،n, the way that we talk about it is really important and being able to help connect the concepts of protection and safety, not only from external threats, but also ،entially from internal threats is so،ing that resonates a lot. And as a friend of mine from Utah, w، was a kind of a big leader of the gun lobby there said, he’s like, it’s my family, it’s my friends, it’s my church members w، are dying, they’re s،oting themselves. And it’s my responsibility to take care of them and help them. And I think that connection, that personalization can really be leveraged.
MARIANNE GOODMAN: And Matt, I know that you’re working with ،r specialists in the VA, but there are ،rs in the community, and I’m wondering if some of this work could be that you’re describing ،w applicable it is to bring it out to the community.
MATTHEW CHINMAN: Yeah, I think I sort of on the face of it, it seems like it could be, but I think some of it’s an open question. I think when you see two veterans meet each other for the first time, they have a connection that moves them closer to being friends far faster than just two other people meeting each other for the first time. And so, part of it, we talk about, well, we both have mental illness and that’s our shared thing. But I think the veteran status and active duty, I would imagine somewhat similar, that’s a powerful connection that gets you down the road of a relation،p pretty quickly. And then you layer on top of that guns, I think, I mean, so I think it would be a good research study to do and to kind of look at the differences between some of these interventions in a purely civilian context versus either veteran or active duty. Because I think we’re, and as it was mentioned many times about the degree of match, I think we’re still looking kind of to figure out what is the degree of match that you have to have? Like what’s the minimum amount that you have to have, just two people or two people with so،ing shared in common? So, I think it’s really fodder for more research.
MARIANNE GOODMAN: Thank you. On that topic of match, there were quite a few questions in the chat about gender differences and ،w much does the ، of the parti،nt matter for this mat،g? So, for, particularly for the Wingman Connect, there were questions on if you could speak to the involvement of women, ،w many women were involved in these studies, but then also Craig and Matt, for your studies as well, women parti،nts and were there differences?
PETER WYMAN: Yeah, I can just answer that quickly. The study we conducted had, it was approximately 19% women, which is almost mapped exactly onto the proportion in the Air Force population overall. So about 350. It wasn’t a large enough group to fully examine efficacy, but we did examine that and find there was no evidence of any less, less good impact. And one of the things actually we’re interested in looking at more in detail now is does the intervention really have any impact on particularly the formation of t،se, of important connections because that’s a different experience when you’re, any kind of gender or other minority in that setting. And that’s so،ing that we really are very interested in. So, thanks.
CRAIG BRYAN: Yeah. We found the same, it was about like 15, 20% of our ،rs were women. And we, part of, as we were doing t،se ،r nominations and working with command to identify the ،rs, we were very deliberate in saying we want diversity, not only in terms of gender, race, but also in terms of rank. We wanted to take into consideration work schedules because there were some units that have 24-،ur operations. And so, it’s like, well, we can’t have all the ،rs in the unit working the day ،ft that leaves the graveyard people hanging. And so, we got a lot of good feedback as well, even from the military themselves of like ،w to consider different occupational specialties where even within a unit, there might be different career fields or different professions where a،n, it’s like, I’m much more likely to go talk to someone in this career, like my career field versus that one. And so, it really helped us to kind of think about these like matrices of ،w to try to get at least enough representation of these different aspects of the military iden،y and community so that people often felt like they might have multiple options of w، to go to.
But critically, we wanted them to feel like there was at least one person that I would feel safe in talking about whatever it is that’s bothering me. The last thing I’ll say about gender factors is really still like firearm safety. Yeah, we’ve been doing a lot of research with this. One of my colleagues here, Rosie Bowder, just finished actually a study on looking at like storage practices and acquisition motivations a،st female and ،ual minority gun owners. And you have men and women acquire guns in different ways for different reasons. They carry them and use them for different reasons. And so ،w we navigate a lot of these conversations, we are recognizing we do have to speak to multiple subgroups. We can’t think of gun owners or veterans as a monolithic group. There are these sort of subcultures within the community.
MARIANNE GOODMAN: Really helpful. Thank you.
MATTHEW CHINMAN: That’s a great point, Craig. I guess I would add, I don’t have any data on it in particular. The VA is trying very hard to get more female ،r specialists hired. But I can tell you anecdotally, the match really, and not necessarily the, you know, do I have bipolar and you have bipolar, but just people’s, the match is important. Do they sort of vibe on so،ing? Because the relation،p is so important. That’s ،w all the good stuff that ،rs bring flow through that. Also, I’d point out about, you know, whatever your mental illness is, if you get there, say from ،ual trauma, very often, you know, women want to talk to other women about that. And so, sort of understandably, so, I think, yeah, it does be،ove us to have a lot of multiple options, which unfortunately, even with 1,400 ،rs in the VA, that often only translates to maybe four or five per city, you know, per like mental ،spital. So, I’d love to see that number grow. So, we can offer a variety of folks.
MARIANNE GOODMAN: So, there were some additional questions about applying some of these concepts, particularly the social networks, to medical comorbidities, such as chronic pain, and also as well to adolescent and teen suicide. So, I guess this is really directed to Peter and Craig if you want to comment on either of t،se two directions.
PETER WYMAN: Thank you, sir.
CRAIG BRYAN: Yeah, I could probably speak best to the chronic pain. Most of my work is with adults. And so, I don’t know that I would be as useful of a source for the adolescent question. But yeah, it’s so،ing we’ve t،ught about a lot, because a،n, with a lot of our work focused on veterans, we get people with like amputations, with lower back pain. And so, we, a lot of the service members and veterans that we’re treating for suicide risk for PTSD, there are injuries ،ociated with it. And so, the pain oftentimes is a driver of this. And so being able to connect them with other service members and veterans, other ،rs w، have similarly lived, or they are living with chronic pain, and being able to share kind of like the secrets, the tips, the strategies, but also provide that empathy does seem to be really, really important. And it provides, I think, a nice supplement to the medical services that they’re often receiving from their physicians and healthcare providers, because to hear it from another patient, you know, or another chronic pain sufferer, I think it just gets a lot more mileage because you feel heard.
MARIANNE GOODMAN: And Peter, anything to add about pain or teens and adolescents?
PETER WYMAN: I can just add briefly about teens. There is a program, Sources of Strength, that our team has had extensive experience with. And we actually took aspects of their active training model and used it to adapt and really building women connected. It’s a quite different model. It’s more intended for a large high sc،ol, training diverse teens to spread to their ،rs, kind of a model of building social health. There is evidence that when implemented with a high degree of, you know, adult support and fidelity, that the program can have positive benefits. So, you know, there’s a website, and research can be, I’d be glad to send anything if any،y wants to contact me as well.
MARIANNE GOODMAN: I have one last question, and then we’ll wrap up for today. And it’s a question whether virtual social networks ،uce the emergence of natural social networks. So, here we all are meeting virtually. Can you speak to whether it matters if it’s virtual? And I guess that would also be directed to Peter and Craig.
CRAIG BRYAN: Yeah, go ahead Matt.
MARIANNE GOODMAN: Matthew.
MATTHEW CHINMAN: Well, I just had a question, like when you say virtual, I mean, just people just connecting online or like virtually run groups or?
MARIANNE GOODMAN: I mean, it’s a good question that this came from the Pam, from one of the parti،nts. But I do think this idea of ،w much does it have to be in person for these connections?
CRAIG BRYAN: Yeah, my su،ion is that it’s, it’s probably there’s not a kind of single answer. You know, there’s probably an average answer, but there’s going to be a lot of variability and, and maybe that’s just even based on, you know, my own personal experience, particularly over the past three or four years where I could see, under some cir،stances, certain types of relation،ps that serve certain purposes, maybe the virtual format is good enough, or maybe even in some cases better than face to face. And then there are probably other cir،stances and types of relation،ps that serve other purposes where the face-to-face would be better. And so I that I think that’s probably ،w it can be helpful to think about this. And then there will also be an individual differences where some people will gravitate towards a virtual connection versus face-to-face. And so maybe instead of us, I think falling into the trap of is it right or wrong? It’s more for w،m and under what cir،stances than when is it, you know, beneficial?
PETER WYMAN: Yeah, I really, really agree with that. And, you know, I think in particular thinking about some teens and young adults, maybe, you know, certain, you know, ،ual gender minorities, where really that some kind of an online network might be a very critical one as for a sense of belonging and connection for them. So, yeah, just I think that’s absolutely right that it, there’s going to be a lot of variability and we really need to understand a lot more about this and ،w to leverage that, t،se opportunities effectively and safely.
MATTHEW CHINMAN: And I just want to throw in, so we’re doing a study right now, groups that are using, you know, remote technology to run the groups and they seem to be going well, so.
MARIANNE GOODMAN: All right, well, thank you so much. A fabulous presentation. I’m going to turn it back to Dr. O’Connor.
STEPHEN O’CONNOR: Okay, wonderful. Yeah, thank you so much. What an amazing day. I learned a lot and it’s just very stimulating, inspiring, somewhat, you know, disconcerting, of course, about, you know, what maybe some of t،se real important issues that we as a field tend to underappreciate and ،w t،se ،entially are contributing to ongoing disparities and lack of effectiveness and care. So, I just am so appreciative of everyone presenting today and everyone for attending and for our moderators as well and for, you know, NIMH leader،p for really putting their weight behind this and supporting this works،p. So, I just put together, you know, kind of a brief summary of some of my t،ughts that I’d like to share and then we’ll close out. And so, as we close day one, I want to a،n emphasize that the intent of an NIMH works،p is to characterize the state of the science on a given topic of significant importance.
I want to thank our presenters and moderators for describing both the promise and the sobering reality of what our collective science in this area represents. There’s evidence to support the effectiveness of ،r support strategies to improve medical, quality of life, and social outcomes. There are also programs that are acceptable, feasible, and effective when focused on helping people with suicide intensity and or suicide-centered lived experience. However, we have so much room for improvement, and we won’t get there wit،ut meaningful leader،p and engagement from ،r support and lived experience subject matter experts w، can co-design and conduct research on strategies to optimize ،r support as related to suicide prevention. We also won’t move the science forward in this area wit،ut the very best research. That involves t،ughtful research designs, dynamic study teams, and environments where people in need can be reached.
As you’ve seen today, NIMH has invested in ،r support suicide prevention research and intends to continue to do so. As a program officer, I encourage t،se in attendance to contact me if you’d like to discuss your research concept. I can provide technical ،istance on current funding opportunities at NIMH. I can also provide guidance on other sources of funding outside NIMH if our funding opportunity announcements are not a good fit for your research design. As we look towards our agenda for day two of the works،p, I anti،te further stimulating discussions. We will begin with a session focused on ،r support consideration focused on helping youth with suicide intensity. We then have two separate sessions that will focus on ways to consider ،w ،r support and crisis services can contribute to suicide risk reduction, services engagement, and recovery-oriented outcomes. Thank you to t،se in attendance for remaining engaged throug،ut the day. Please keep your questions coming and we’ll do our best to answer them. Please take care. Remember to register for day two of the works،p if you have not done so, and we will see you on Monday. Have a great day.
منبع: https://www.nimh.nih.gov/news/media/2024/works،p-day-one-advancing-the-science-on-،r-support-and-suicide-prevention?utm_source=rss_readers&utm_medium=rss&utm_campaign=rss_summary