Engagement and Recovery: Social Media/Technology for Outreach and Engagement
Happy. Winds-day everyone. We're so glad that you could join us for this final, webinar on our topic of. Recovery. Oriented approaches. To treatment and service engagement, my. Name is melody reefer, and I'm going to be the moderator for today's call, I, want. To give you a quick orientation to. The room in case this happens to be the first recovery. To practice, webinar, that you have. Joined. We. Have on, the, screen. Several, different, boxes, of varying. Sizes and, each. Box. Or pod provides. A, specific. Opportunity. For. You and I. Want to show I'm going to speak to a couple of these very. Specifically. If. You would, like to have closed, captioning. Please. See. The, box, that's labeled, captioning. Information. And that. Will. Allow. You to, access. The. Captioning, in a separate, window, that. Way you can see the presentation and, that. The text. In. In live translation. We. Have a participant. Chat pod that, is open for everyone to use and, I would invite you to greet, one another and let us know who. You are where you're from maybe. Even what you do. Especially. Share, thoughts. And ideas you, have about the topic we're going to be discussing today, however. If, you have questions. For. The presenter, please. Put, those in, the. Box right, under, the PowerPoint. Slides it's. Labeled, tech and topic, questions, so of course those would be topics, I'm sorry questions, related, to this specific topic. And we. Will hold those questions, until the end of the webinar we'll, get to as many of them as possible. You. Can get, a. Certificate. Of attendance or. You can earn a continuing, education. Or, webinars, at the, end of the webinar you will see the screen change, and there will be a link for accessing, the information and. There. Are some questions to answer if, you want to get the continuing. Education hour. You'll, need to complete a very brief quiz and I. Would, encourage. You all to do that it's great to get free, continuing, education, credits so. I also want, to say as a part of that. Orientation. That. The. Views and opinions and content, in this presentation. Are. Those. Of the speakers, and don't, necessarily. Represent, the views and opinions or policies of. Sansa, or, the Center for mental health services, or the, US Department, of Health and Human Services. Just. A quick word. As. I mentioned this is the third in, a series of three, webinars where, we've been looking at, engagement. And. An outreach, and. As. I've. Seen people's questions and some of the discussion. And and then even to clarify, for myself, it's like I. Is. There a specific, definition. That we can use in behavioral, health for. These terms because, sometimes, they feel like they're. Synonyms. Are. They different tasks, and so I. Did a little bit of searching and came, up with these I, think pretty, manageable. Definitions. That. Outreach, is the process, of bringing in, people, who. Don't. Know about or. Haven't. Accessed. Services. Before so. It's the, it's. It's. Reaching out to people who don't have that connection, or understanding. Engagement. Is, kind. Of after, you've made that. Initial. Connection. And it's the continuing. Development of, rapport. Offering. Support. Making. Sure that folks continue. To feel welcomes sometimes. We do a good job. Welcoming, people at. The, very beginning, and then forget, to check, back in with them so, outreach, is the thing at the beginning it's the host at the door of the restaurant. Engagement. Is the. Waitstaff. Continuing. To pay attention to you. While, you're there so that's. The way that it made sense for me to think about this. We. Know that. That. The, research. Around. This particular topic, that we're addressing with, social, media and technology is. Really. Changing rapidly, I mean if you just look at studies around social media and, technology alone, outside. Of the behavioral health just in the world things, are changing, quickly and. When. We do, an overlay of the behavioral. Health system, in that, all. Those changes means. That, it's a little challenging. To. Come up with a with, a this. Is how things are because. It's it's rapidly, evolving. And so research. Challenges. Actually provide, ongoing, opportunities. For learning and what. You hear today is. Reflective. Of the past few years is, predictive. Of the next, couple of years and, there, can be some pretty, significant. Changes from that point on I, think. We're, really lucky to have the presenter, that we have today because, he, is someone, who is. I. Think a pioneer. In. Really. Looking at the, significant. Relationship. That can be established, in. Working. Alongside, individuals. Living. With serious mental illness, and the. Community, health providers. And. How. Technology. And social media can be a tool for, connecting. So. Without. Further ado I would like to introduce you, all to. John. Näslund, who, is, a. I. Want say this right, with.
The Department of global health and social medicine, at Harvard, Medical School, John. Thank, you for, doing. This with us and I'm. Very. Excited, to learn from you today, welcome. Great. Thank, you thanks so much melody, for the introduction, and for, the invitation to, present, at this webinar. I'm. Thrilled to be here and I'm very, pleased too that. So many people have joined and are interested in this topic this, is something that, I'm. Very listen area of research and very passionate about very interested, in and. I'm. Looking forward to talking. A little bit about it today with with all of you and, what. I'm hoping from. This presentation, is, that I. Can. Highlight some of the research, work that I've done in this area and, some. Of the research that is ongoing and, some of the new areas for development and then, also that I can, learn from you I hope, to use this opportunity. To. Sort of get. Some questions from you and. The question and answer period afterwards and then also if, anyone does have any questions for me I'm always, open, to. To, following, up afterwards, by email so please I, think this is a great, opportunity for all of us so I'd. Like to just get. Started here. First. Just to think. A little bit about why this. Topic is important, and why we do this work and one. Of the things I want to highlight is that according. To the US National comorbidity. Survey and you have to be epidemiologic. Catchment, area surveyed we, know that fewer than half of persons living with serious mental disorders, are. Engaged. In treatment in, the past year so that. Means that over half are not receiving treatment we know, we know the drop out from care is also extremely high we know for young people especially that. Over 80% of young people drop out of. Treatments. To be the first episode psychosis after. The first year so. This, really shows that poor engagement, is a, very, serious concern and, can lead to worsening of, symptoms, risk. Of hospitalization and.
Really, Not achieving. The full benefits, of treatment. So. When we think of engagement, so you can see I have this slide here that, highlights. Again. Kind of reiterating. What melody, just mentioned with regards to out gate outreach, and engagement but. When we think of engagement, what exactly, does this mean and I like to think of this as a concept, where we combine the views of the individual, whether it's a service user or a patient or, someone, with lived experience and. This includes, this individual's knowledge their skills their culture, their ability and their willingness to manage. Their, own care and also, their willingness to be an active participant, in their healthcare and when. We think of this and, the. Cause there are a number of causes that would contribute to poor engagement, so it. Causes a poor engagement, on multifactorial. And we have to think really carefully about that and we can't ignore that there's legacy. Of mistrust, there's. Very serious social and life circumstances that, can impact engagement. We. Can think of things like socioeconomic factors things. Like poverty homelessness. Poker. And substance use disorders, etc, we. Also have to think about the. Fact that maybe treatment, isn't working for many individuals that's, another concern, that's very real time, and then there's also logistics. Just traveling, to get to treatment can be a major barrier. For many individuals, as. Well as the. Cost in terms of lost time and. The. Need to. Forego. Other offered, other, priorities. Whether they're family or work. Priorities. So. When, we look at this, diagram. Here of thinking about reaching engagement, I'd. Like to think of engagement. As something that really brings all of these aspects, together and the reason I'd like to think, of that it's something that involves. Empowerment. And inclusion involvement. Building. Trust because. This this really aligns very closely with, the concept, of recovery, oriented. Care, and we. Know that when, we think of recovery oriented care, this is something. A process of change through, which individuals improve their health and wellness live. Self-directed, lives and can strive to reach their full potential, and this is the definition according, to Samsa, so. The reason that this is so important, when we're thinking of engagement is, that, a successful, engagement strategy. Really, needs to prioritize things, like autonomy, empowerment. And respect and I think all of these are brought together on this slide here. Um. So where, does social media fit, in all of this and why why, is technology, something that we. Should be thinking about as a potential, way to support. Engagement, and. What I'm going to talk about in. The, next few minutes is really thinking about how social media as, well as other types of digital technology, can, actually support these different aspects of engagement, whether it's empowerment's. Or inclusion, or. Building trusts, or increasing, awareness. So. Just, to highlight some of the objectives for for, my talk today and and what. I'm hoping to cover with all of you first. Is just trying to understand a little bit more about how social media can actually, serve as an outreach and engagement tool. Thinking. A little bit about some, of the examples of, using social media for engagement and, I, will highlight, an. Expensive, body of work that I've. Been leading, with colleagues at Dartmouth to. Leverage. Different technologies, for supporting. Outreach. And engagement for, health promotion and people with serious mental illness. Also. Then really, importantly recognizing. Some of the challenges, and risks of using technology, in this way and then, we'll talk a little bit about some of the future opportunities and, and why I think this is a really exciting area of both, research, and then also a way of. Improving. Outcomes and, I, think. One, of the goals we're all working towards, um. So just think. Again the highly a little bit more about. Why. Why. I'm passionate about this work and why this is something I. Care. About so much and I think we. Know that 1 in 17, Americans, with a serious mental illness comments, including, schizophrenia, and, bipolar disorder, and, major depression, but. What's really unique about this population group, and.
Often. Why they're considered, a group, of a population that is difficult, to engage, in interventions, or. There, are challenges with engaging this group is because of the very. Serious social and, social. Determinants, of health and we can think of things like, the impact of discrimination. The. Effects of poverty and disadvantage I, know. I mentioned this a little earlier but these are, serious very important factors when we're thinking of engagement it. Can be especially difficult and, challenging when. Thinking of trying. To overcome challenges such, as homelessness, unemployment. Substance. Use and. Then also back. To the plan I mentioned a little earlier about the. Few. Number of people who are actually engaged in, treatment it's, also important to recognize that a, very, small portion of the, treatment that individuals. Living with serious mental illness actually received it's considered, adequate so that, is also a factor that contributes, to a lack of engagement so. What. Happens when, so I mentioned that when we aren't unable to engage, these individuals, and treatment, it. Can lead to a number of poor, outcomes um there's. Also another there's, other, factors. That are really important to think about it and this has been a real primary. Focus, of my work for several years is really thinking of the. Early mortality. Disparity. That exists. In people living with serious mental illness and we know that this population group they, die considerably, earlier than the general population and. We know that this is largely due to preventable chronic. Health conditions, things. Such as obesity and serious and. Tobacco. Use are contributors, to cardiovascular. Risk, and we, know that these rates are far greater than in the general population. And. Then some, of the factors. That contribute, to this really high risk of mortality. In this population group again. Are the impact of things like medications. Lack. Of access to healthy. Foods unsafe. Environments, but. Then also other, barriers, related, to the actual mental health, symptoms themselves and, then just an overwhelming lack. Of control over life circumstances. So, what. I. Sort of this picture here to begin, to show why we've. Bought. Very carefully about how to use, technology and, social media to try to overcome all of these different challenges so the challenges, all can, get in the way but there are we have to think very creatively, about how to overcome them and that's where, social. Media creates, tool that. We can use to help promote. Engagement in, programs, focused, on health promotion so. I'm. Going to talk, a little bit about health promotion just because this is an area as, I mentioned that I've worked in this area for some time and, I, also, going, to show. A little bit about. The. Existing. Health promotion programs some of the challenges, with engagement and then how we've used social media and other technologies, to promote engagement, and to. Encourage. Individuals, to participate in these programs and then where we where I see this moving. Afterwards. So. Let's, start just quickly with some, of the existing health promotion programs I want, to highlight this just to show that we're building on a very. Large evidence, base. This. Is work that I. Was. Fortunate enough to contribute to through my dissertation work, at Dartmouth projects. Led by Professor. Steven bartels. Here. There's a health promotion resource, guy that we were, actually commissioned, by Sam's let's prepare and really what, I'm showing here and, there's also some results from some, very large-scale. Randomized, controlled trials, and. The reason I want to show this is that there, isn't a strong evidence base showing. That, you can actually help. Individuals, living with serious mental illness. Reduce. Risk. Of early mortality so, really address, some of the risk factors that contribute, to this early mortality gap, and. This has been this work is also others, I just want to acknowledge that there's research. Groups that Johns. Hopkins is, also also in California, that have led. Similar large-scale, trials and really. Consistent. Results across all of them and, this work has been replicated in a number of different settings with different racial, and ethnic groups and this, is all again through community, mental health settings. But. There are a number of challenges with, acts individuals. Living, with serious mental illness to, participate, in these programs part. Of it is the reach of the programs you can only enroll a certain number certain.
Time Accessing. The programs can be especially challenging there's. High costs, associated, with them when we're thinking that the, community mental health setting. Level and, then engagement, can be a challenge, so, attendance, is not always very. High these programs, and. We want to think really carefully about how we can actually try to overcome, these challenges and that's, where we have been, moving towards the use of technology, as a way to, both. Engage get, participants, through the door and then also to try to keep them there using. The same analogy that melodie mentioned, earlier so. I'm, going to show, an example of where we've taken some of these evidence-based, strategies. That are highlighted in the literature I showed on the prior slides and how we've incorporated the, use of peer. Support and, social media to. Promote to. Support, health promotion, so this is on the second. Part of this arrow here, um. So you may be wondering why would we have thought, of this and this is this. Work started several years ago now this is kind. Of right when, smartphones. Were growing. In popularity, and. This. Was something that was very new at the time it was something that was almost unheard of to use social media and in a community, mental health setting let alone other types of cell. Phones or smartphones for any type of, programming. So, part. Of this comes. From the fact that's just been absolutely, rapid. Increase, in the use and access of Technology in a society you know this was a worldwide phenomenon. But especially. Locally. We've we've observe this very rapidly in the last few years we. Wanted to, confirm. This and are in the population. Group that our. Research team was working with so. This happened really through a. Combination, of interviews and surveys and, we, learned. Through. The community mental health center, that we were working with that, access. To Internet use of cell phones and. Use, of social media was very comparable, to, nationally. Representative, data and, for. Us this was. Terribly promising, I showed. That access. Was high we also. Have. Seen in the literature that this has been confirmed. By. A number of other studies and another a. Number, of other, research. Groups have found this in different parts of the country so this is pretty consistent in, many settings. We. Also talked with. Individuals. Just. Talking, with them and finding out you, know what what's, something that you're often. Doing and I think overwhelmingly they are, they're on Facebook they're using. Their phone and, it just seemed like well this is a place where they already are maybe, we can try to, leverage. The fact that an individual. Is already using Facebook, to help deliver some targeted content to support their engagement, in a program through. The community, mental health setting where they're seeking services. Another. Factor to when. We think about how we, were integrating. Technology. Into the programs that we were. Working on delivering is. I like to show this this. Conceptual. Overview and, I think of this is as kind of a, path. To living, a healthy lifestyle and what it you know what we hope it looks like and I. Show. This on the left side we think of what. A straight arrow on your screen as. Something, that you know that's how we hope changing. Our health behavior is or how managing, the chronic health condition, or managing, a mental health disorder. Really. Any type, of thing to do with your own personal health we, always hope it looks like that we hope that you know today we'll make a decision, to make a change and then tomorrow we'll get the the outcome that we want the. Reality that is not at all what any, type of behavior change looks like whether you're trying to help someone live. A healthy lifestyle address. The substance use, concern. Or. Manage, a chronic condition over time we, know there's a lot of ups and downs and that's why I have that squiggly line I really. That is the process that someone goes through and it's it can be challenging, at times and there's many, many. Areas where there's you know you relapse, back to the existing behaviors. It, kind of goes around in circles just, really highlighting, the the challenges, that come along the way and, when. We think of how Tecna you can play a role is it maybe something to help iron, up those kings you know help someone support you know if someone is having challenges and they slip back they have they have they sort of a relapse or they fall backwards, maybe, a very, targeted. Prompt. On a mobile device that they already own and they're already using maybe, just getting that very carefully. Planned, support, can, help get them back on the right track in. The same way we think of social media in this way it's.
Social Media a way that you, know you're facing challenges, can I connect with someone through, an online group then they're gonna give me the support I need to help me overcome these challenges that, I'm facing today so that's, just conceptually. How how. I think of using technology. And social media in this way and. Then also just back to this same, idea that we know that. Most. Of the individuals are working with our active, online in some way and how can we leverage. This opportunity. So. I'm going to present to you just an, example this is called the pure fit program. And, the pure fit program is is something that we've. Been working on developing, so, Kelly aschbrenner is the lead. Investigator, on this project and I've worked very closely with her to. To. Engage consumers. In the development of the program as well as peer support specialists, and. This work has gone on through a number of iterations and, then but carefully, involving. Individuals. With lived experience at, every step of the way and really learning from them about how they use technology how. They want to use it is part, of this type of program and, also how they see this is something that can help promote a healthy lifestyle, and managing. Both mental, and the. Other physical. Health concerns that they may be facing, so. This, project is. It's. A very very much based on experience, or learning the actual program I'll, quickly give a description, and involves weekly, group based sessions, but. Then technology, is a key component. And, really the technology, piece is really aimed at promoting, engagement. In the actual, content. Of the intervention, so there's group, 8 sessions that are in person but then a lot of it is kind. Of the all the hours of the day and all the days of the week where someone cannot come into in-person. Session, because it's just quite, simply not feasible to do that, how. Do we support someone in those other times of the day and that's really where technology. Comes in so. We've used technology in a few different ways to engage, participants, and one, of the ways is through wearable devices and this is something that I've. Been. Very. Pleased the, levels. Of engagement with. Using wearable, devices so, like activity, trackers this. Is something they they were very you know they were very new and we started this work, now. Of course they've been around and they've gone through so, many different iterations. But. At the beginning they're very, simple it's kind of like a hi-tech pedometer. In some ways and participants. Are excited about this this was something that was, new to them and. Was. Easy to use and could. Help promote goal-setting, and help.
Really. Encourage. Participants, to get to be more active as part of the program text. Messaging again that's a fairly. You. Know again that's a, technology. Tool that's been around for some time now and and, there's incredibly effective, it's very, low cost and. When, we use text, messaging it was really, just around first. Reminders, which are pretty benign. And just helping, participants your mind you know reminding, them about the goals that they've set for themselves. You. Know to check out the Facebook group to try to be active and. Also to come. To the in-person sessions, um but also to provide some. Motivation, and encouragement so. You, know providing, very you, know just personalized, messages, around, reminding. Someone you, know that they're doing you know they're you. Know we're, happy. That they're working hard you know they should feel good about themselves and ways to really try to help, build confidence and, self-efficacy, and, to help participants. Feel better about, themselves as they are in the program and also a reminder that you. Know as as. We. We deliver this program that you know there's someone who cares and then the last thing is this private. Facebook. Group but I'll talk a little bit about and, again, this this comes back to the qualitative, interviews, that I was. Leading with participants, and with. Consumers, and really, learning that, pretty. Well all of them are active on on, Facebook in some way and. We learned that there was interest in having this type of program, support. A. Program. Through the community mental health center, so, the, Facebook group really was designed, as, a platform to, facilitate. Interaction. Between, participants. So the primary goal is actually to allow, participants, to support, each other outside. Of the in-person sessions, um it was also a way for for. Us as lifestyle coaches so I was, one of the lifestyle coaches in these early. Studies um it, was a way for me to actually share, content, with participants, and to post content that, participants, may have missed if. They could, not attend one of the in-person sessions, and. We learned that. Oftentimes. It. Was difficult to show up for an in-person session, and someone, might go online and, find out what they missed on through the Facebook group so. I'll just talk a little bit about what the Facebook group looked like we. Used the secret Facebook, group feature and. This was really ideal because it was by invitation only, so. I could serve as a gatekeeper, and make sure that only participants, in the program could could join, another. Advantage with this approach is that only participants, in the program could see that the group even existed. We. Made. It very clear to participants, what the goal of the Facebook group was so this was not, used.
As A way to, deliver. Treatment. Medical. Treatment it was really a way to support. Health promotion, so. Participants understood. That and we, also made it very clear that this was a safe place where, participants. Could share. And interact with each other and. Learn from and encourage each other. We. Also made. Sure that we posted weekly content, again, just showing. What types. Of. Content. Was covered in the group sessions and. We. Also showed participants, that there were ground. Rules for using the Facebook group. We. Tried to make sure that these rules, were not too. Restrictive, in any way but we did have some very clear rules about what not suppose for example. Personally. Identifying, it mission we, also provided, instructions, and participants, were new to social, media because there were some who this was, something they had not used before and. Just some general instruction, around how to safely, use social media and really thinking, if. You're, going to use social media make sure you're aware that what you're sharing online is. Really, visible, to the entire sort of online. Environment. I. Won't. Go into too much detail about some of the findings though. We had very very high engagement, in this group participants. Were very active, we found that many participants who didn't even show up to the group session, the in-person sessions, were, very active, on the, Facebook group and I think what was most promising, is that we had some. Participants, who had, faced. Many. Participants who faced a number of significant. Challenges in their personal lives whether. They were health challenges, or other types. Of, challenges. In their social lives. They. Would often not. Show. Up to the in-person, sessions, but would be very highly engaged on Facebook so, we felt that this was a way that we could maintain, some, connection, with, participants, were dealing. With a lot of difficulties, in their personal lives. What. We also found was I think most. Encouraging, is that participants. Shared. Very. Very personal, sort. Of things, that they were facing. So not not personally, identifying, information when, we made sure that that that, was one of the rules but just some of the personal challenges, whether it was for. Example I have these quotes here from the group whether it was. Expressing. The loss of a family member we. Also had some individuals, who had. Relapse substance. Used to relapse and. These, were, significant. Challenges that affected how they could participate in the program but they could still maintain some level of engagement, for the Facebook group and I think what was most impressive is that other, participants. In the group, responded. With such encouraging, comments and. It we, saw this, community. Emerge where participants. Really supported, each other and what, was so, important. About this is that. The. Post that participants. When. Participants posted, personal. Stories, or personal. Anecdotes. Like this, that's, what generated the most response, from other participants, it wasn't my post, it wasn't me posting, you know as the lifestyle coach when I shared information about you, know program contents and things like that that, that was not all that interesting, but when participants, shared their own stories that's what generated the most likes the most comments from. The most views and, we. Also found that when, participants interacted. More in the group they actually did better overall in the program they actually achieved, better outcomes. Even. The participants, who didn't come to the group sessions by interacting. In the Facebook group they. Did better overall in the program so, this. Tops was very promising and just, to highlight this program is now being. Evaluated in, a large study, in Boston, and in New Hampshire and. There's, work to, move. This to. A mental. Health setting in, in. Connecticut, as well so we, are building on this work and and, moving it forward. So. Now I'm going to just move into some of the new, opportunities for health promotion and thinking about the role of social media and then I'll get into some of the risks as well. So. This next slide here I this, is an area of. Research. I'm, really very fascinated. And something, that has. Really been something that I. It's.
Been, Part. Of part. Of my research work for some time now and. I like to show this slide because I think it does a better job summarizing why, why. This work is. Important. Than, you. Know any slides with data, or other things on it so I like, to show this because we see, that you, have a situation. Where, the, health system, fails. Someone, they're, not able to access the, treatment they need or the treatment is not good enough and we know that's true for many people living with serious. Mental illness and. This leads to significant. Frustration, and whether, that's because. Of feeling, alone or isolated with the mental health symptoms or, whether it is, just. Feeling, uncertain, or. Feeling. That you have something. You need to share with others this. Has been where this digital, world comes, in where this online environment comes in and this is something where that in. A study that I led, several years ago. Was. Really aimed at looking at this trying. To understand, these naturally, occurring, online. Interactions. That happen among people who have very, highly stigmatized mental, illnesses so, what brings them together online. What, are they sharing what. Are the interactions like and it was very clear that this, is a form. Of peer support where, individuals. Actually, are incredibly, supportive of each other they. Share their stories and personal challenges of living with mental illness they share how. They were able to cope they'd. Provide encouragement, it's. Ways to feel less alone so. These are all incredible, teams that emerge from this work but. I wanted to learn more so I really was keen to actually learn from are, these individuals, and to find out ok. So if you're going, online and, you have a very you know you have a stigmatized, mental unless you don't want to share this with anyone else but you're completely. Open about it online what. Is it that motivated, you to do that and what.
Is It that you think how. Do you feel you benefit from that or can benefit others, so, I initiated, a study where I, used. Twitter to reach, individuals. Living with mental illness I searched, through. Countless. Tweets, for, countless hours finding, people who were talking about living. With schizophrenia or, talking about living with bipolar disorder and I contacted, them just directly, through Twitter for. Me this was a interesting. Experience and that I was. Completely, exposed they used my own, identity, I used my personal account. My. Personal Twitter account and I, contacted, them as myself. I you. Can see an example of what a tweet looked like I would say I'm a student and. This was while I was working on my dissertation, part. Of why I did that it's our. Institutional. Review board at Dartmouth. Insisted. That I be. Completely transparent about Who I am and you, know what it actually worked out very well at first I think I was, somewhat apprehensive I, was thinking, of powering you, know exposing, my identity, online what are people going to see but. Then I just, got such an overwhelming response from individuals. Incredible. Response rates if anyone is familiar with surveys. It's, almost impossible to get this type of response rate that's almost, a 50 percent response rate to the survey and. And. In fact the. Survey was even I sent, a first contact of people to complete a survey the, survey was even shared with others and, then I invited, among among individuals, who completed the survey I invited, them to participate in a brief, interview over Skype or, by phone um, what, I learned from this is that. There. Was overwhelming interest, among these individuals and, actually having programs delivered through, social media so, they, really were, interested, in. Actually having, programs to support their mental health and I found that this was pretty. Consistent, across age groups I looked at whether is. Differed. Between those who were younger. Or older and it was pretty consistent I will. Just mention. That I really. Did not have any older, adults in. Those who, participated. In my in my research study it was really no, one was over age 65 but. That. Could be that definitely, will be changing, there's there's no question as as. As. The. Demographic, shift with, social media is certainly moving upwards there's, no question. And. Then in my interviews, with participants because now I wanted, to find out so if they're. Online and they're talking about their mental illness and they're interested, in programs, well, what these programs look like and this I think is really key for informing. How we can use. Social. Media as an effective, engagement outreach. And engagement tool, so I just. Want to talk a little bit about what, I learned this is coming. From the interviews I had with participants, I wanted to find out from them what, a, program, or, what. A engagement. Strategy, or something, for outreach would actually look like if it was delivered through social media and. This was quite interesting I I think. It's. In. Talking with this is in conversations, with over, 30 individuals. It's. Pretty clear that if, you're, going to use social media it needs to have someone who moderates, it who. Has clear, you know credentials. It doesn't have to be you know a professional, but, it has to be someone who's, got. At least some kind of training or is a peer provider but they make that very transparent, and clear and I thought that was very. Telling. So it can't just be a completely. Anonymous stranger. Who moderates or leads. A group but it actually has to be someone who. Feels. Reputable. In some way they. Have to be structured and organized I thought I appreciated, that because it's. A thought, about how you would use social media and thinking of how to structure. And organize the content I thought, was a very useful comment. There. Also needs to be ground rules so, thinking about if, you have a private. Facebook group much like what we've used in our in our work, but. There would need to be some rules and rules around how. Participants engage with that group, and. Then there also has to be ways to promote. Safety and minimize. Risks, and I'll. Talk a little bit about the risks as well and then in the next couple slides but. This was something that I appreciated also because we do hear an awful lot about the safety and the risks tonight and I think it's something we certainly cannot. Minimize or. Overlook, in any way the.
Last Thing was the free and ease of access there's just that, was so overwhelming, from. Many of the individuals, I spoke to is that, services. Are very expensive, if they have to pay out of pocket and, they, just could, not think of something that they would have to pay so they. Really. Emphasize there would have to be something that's easily accessible, and. That it's free and that. They. They really wouldn't. Have to have that kind of concern, especially. Given the, the. You. Know financial, constraints, and in this population group most. Definitely, and. Then I through, this work I learned of some really exciting, examples, of, successful. Efforts that have really. Leveraged social. Media to engage. This. This. Population. Group so I met. Enough, individuals, from nomming through my, interviews, and surveys and, they, have a very active presence, on the number of social media websites, I learned. Of a very. Exciting campaign in in. Canada called the sick not weak and, this involves, closed. Online, chat groups and. This had participants, from really all around the world and these. Were moderated, groups exactly. As some, of the comments. I received from participants. I also. Learned of a really outstanding. Effort. Called this is my brave and. This. Again is it's got very active presence, on social media and just really, again. The. Content. That's shared among individuals, who are. Part of these these movements, is it's really I think, something that I encourage. Anyone, to look at and to to. See what types of topics. They're, talking about and then the okay to talk that that was an effort that's from. The UK. I'm. Gonna just quickly mention the. It's okay to talk program this is something that I'm, involved with this is a project. Based. In India that. Is focused, on youth engagement, in, in. Raising. Awareness around, mental mental illness and, this, is something that employs. Much of the same. Ideas that I've mentioned using, social media but. It's targeting youth in a, lower-income. Setting, and this again this is a this, is a, platform. I also encourage. Anyone to take a look at but, it's really received incredible. Response from young people who have shared, their, their. Personal struggles, with mental. Illness and also as a way to fight stigma and raise. Awareness. Um. So. Now I just for, the next few minutes I I do want to really I, think. Carefully about the risks and talk, to you a little bit about what I learned before. I wrap, up. So. I certainly in my interviews, of participants, and through the work that I've conducted I've. Really. Tried, to ask as much as possible about what. The, risks, might be and what. Some of the perceived. Safety. Concerns, might be and. I I, do. Want. To highlight that participants. Certainly, acknowledge. That there are risks, on social media they they certainly. Felt. That way, certainly. With. Revealing. Their identity, for some it was concerns. Around whether. An employer might see them online, others, they were concerned, that actually. A family member or loved one might actually find out what they're sharing with regards to their mental illness I also. Learned from participants, that some. Of the hostility. That they may have experienced, online though it was very I have. To highlight it there was very few instances where, people. Did experience hostility, though it did happen and sometimes, it was oftentimes, it was from actually people. That they knew and. People that they knew in like, the offline world the real world who.
Found Them online talking. About the mental illness and and with. Sort. Of post comments that that's not real what you're experiencing, and things like that and, and. What I learned is that these types of experiences were. Similar. To the bullying were perpetuated, through social media so those were things where participants, would then, really. Make sure to, carefully navigate, their identity, online and offline, so try to avoid these types of situations. There. Are also a number of other types of things but. Were. Observed and I think it's related to you, know misleading, information online, the. Risk of trolls. There are also, there's, also discussions. That are quite. Hateful or discriminatory, and. Can. Actually contribute to stigma, I think. Overall, and what I learned is that the, benefits, of connecting, and reaching with others at least expressed by participants, far. Outweighed the potential risks though. There was strong recommendation. That to, use. Social media in this way for, promoting, engagement and, for reaching, individuals, living with mental illness it's. Really clear that there needs to be ways. To educate participants. About. What. These potential risks may be so, if, this is true for example of programs potentially, true Nadeem at the health center. Then, having, some education, for consumers, about what, the types of risks might be and what safe, ways to use online, platforms, how, to use them safely if. It's online I have a friend. Who with, lived experience and she leads a, very. Impressive Facebook, group with. Hundreds. Of members from all around the world she, has very clear. Ground. Rules that are posted right at the top of the group that really highlight. How to. Use. The group safely, and, ways. To ensure, that everyone, in there is. Is, it's, a safe place so that they're not but. They understand why they're part of the group and, that there's ways that they can protect themselves from some, risks. So. Just in in wrapping, up I do, want to highlight that, there, are some challenges, that. Are. Important to consider and, what, I've shown you today is some, work that is. Focused. Around health promotion, partly, because that was. Area. That. Worked. Very well for using social media having. Said that there's definitely other ways to use social media to promote programming. Through community, mental health settings but. I do want to highlight that there really are not many, large. Scale studies. To support how, this would work so what. I think is really key is that we need to think about what. Types of research needs to be done there needs to be larger studies and there needs to be more work to carefully consider the risks. As. Well as the individuals, who may be still do not have access and that really is key and thinking of those, who are in, the most impoverished. Settings, and. Most. Marginalized, and disadvantaged, I also. Think is just one in closing, on this last slide here I. Really. Want to highlight how important, it is in any type of engagement strategy, or any type of work using social media some, very much closely, involved. Individuals. That you're trying to target in the development process and. I can, speak to this with the work I'm doing now with with young people. With. Mental, illness and really, involving. In actually informing, the design and the contents and, I really think that these. Efforts cannot possibly, be successful, without involving. Individuals, at every step of the way and, I think that's something that if. I can, leave one message from, this talk it's really to take, the time to learn from these individuals, to ensure that they have a voice and how you're using social. Media or other technologies, to reach them and. Really. To ensure that they're active, members in every aspect, of. These. These types of strategies and how they're delivered. So. I will I will wrap it up there for questions, again. Please, do. Feel free to contact me I'm happy. To answer any questions you may have or just share some of the work. Or. Share. Some of the papers or publications. With, anyone who may be interested, and. Should. I send it over to you. Yep. Absolutely you, should send it over to me. That. Was that. Was excellent. I appreciate. Your. Well. The depth of content given, the constraints. We have with time, and, interestingly. Technology. And. The. Participant. Chat and, the, topic. Questions, have been just. Bouncing. Around and, and. Folks, are really, very. Interested. And I, can, say right now we're not going to be able to get to every, question, I. Think. That. We. Can, pull. Together a, brief. Kind. Of response. Sheet, that, can be. Made available when. The recording, goes. Out to, everyone, who attended we, may not be able to address every question then. But. We'll try to get, to as much as possible there. Are a couple of questions though that I that, a number of people.
Asked. And so I want to kind of start with those, first, one. Is about. Full. For your for your research. Do you, pre-screen. The. Participants. Prior to involvement. In. The social, media groups. Sorry, I'm, not. Sure if I completely, understand, the pre-screen, so I can explain. That in the work, that we've done in in community, mental health settings, both. In Boston, and, in. New Hampshire. Individuals. Are actively, enrolled in care so we know that they they are receiving, services so one. Thing to point out as they are receiving, services they may not be a representative, of individuals, who are not enrolled in services, so I think, it's boring to highlight they're already engaged to, some extent. But. Having said that they still are facing those same types. Of challenges, that I, think those who are not in care, face. On a regular basis, in. Terms of screening we, have. No, criteria. They they have we have no criteria around, use. Of technology, but, screening, is typically based. On they have to these, were adults that had to be 18 or older, they. Also had, to have a, one. Or more risk factors for early. Mortality so that. They were mainly clinical, criteria, and, they also had to have a confirmed. Diagnosis, of a serious mental illness, in. Terms of screening. For whether. They use technology that. That was not a requirement, we actually had some participants, that were completely, new to even using a smartphone we had some who had. Higher. Levels of, impairment, so a phone, was something that was very novel and they had never had and we through. Our study were able to provide phones for these individuals. We. Also had some some, participants would never used social, media at all but, they were willing and interested to use it just, the last thing is everyone who participated, was a volunteer. They they, consented, they completed informed consent and they, knew when they find out that the program involved, social media, use. Of wearable devices use. Of group session so they were all informed, ahead of time so they did make their. Own choice, to, to enroll. And, and so. How. We're issues, of. Anonymity. Or privacy. Address, in. The. Social, media-based interactions. That's. A great, question, so, for. Participants, who had their own Facebook, accounts already we. We. Explained to them one. On one and then also as a group about how the group would work how the Facebook group would work. First. That if they had their own account they could choose to use their own account if not they could create, a separate, you, know separate account for the. Study, having. Said that that can be challenging with with some of the Facebook rules now for. Participants who were in new to the program we. Helped. Helped. Them create an account if they were interested, and there were several that were who were and. We. Could help them make an account with you know maybe they didn't use their actual photo we. Made sure to review, things like the privacy, settings, to ensure that they were on the highest level of settings and, then we just really made it clear what the, potential, risks would be so it was really a lot. Around education, and helping, participants understand, how, to use these platforms, if they were new to them and then even if they weren't we did we provided, the same education, even to those we're already pretty savvy on social, media right because, some of us learned.
The. Hard way and it could be helpful, to skip some of those steps. So. Another, question was. Given how social, media. Is. Contributing. To negative. Mental health outcomes for, some how. Can we do health promotion on. Social. Media responsibly. Yeah. That's that's an excellent question and, and I. I. Think that it, is true there are a number of studies that have highlighted. The. Connection. Between things. Like digital, technology, use smart phones and create and then risk, of increased anxiety, or feelings. Of depression and. Now. Just to be clear some of these studies are still very, some of them are preliminary, they're. In certain. Population. Groups but I think, it's I think it's safe to say that there, are some potential risks with this what. I think we need to think about as service, providers and as as. Researchers. Is that, how. Can we use. Social media knowing. That these are possible risks, because. I think what what we have to think about it also is that I piloted. I highlighted on those slides earlier that use, of these devices is, happening, whether we're doing, research or delivering programs or not I mean people, are gonna be on Facebook if we're using it or not for for mental health for. Promoting mental well-being what, I think is important, is if we can. Go into developing, these programs knowing, that, there, are risks, with using these platforms but, how can we use them in the safest way possible so, I. Think, the best way to answer that is that we, have. To be, very, aware of how, these platforms, can contribute to mental health concerns we, have to recognize. That people are going to be using them regardless, and then we have to just think that this, is an opportunity for us to get very, beneficial. Programs. To people who need them most. Yes. Yes, and, I think that's an important, acknowledgement. That, that. The, behavioral. Health issues. Don't exist, in a cultural, vacuum that. You, know. I as a person with. A diagnosis. And in recovery, live in the big world and. And. The. More or. The less services. Are involved with the big world but, kind, of the more at risk I am so. That's. A great observation I. Where. Quickly. Running out of time and I know that you had a, thank you slide John. And I'm going to assume that these are some of your, Co. Researchers and. Co-authors. On some, of your publications. Yes. That's right yeah these are. Current. Collaborators, and I. Certainly. Would yeah wish to thank all of them especially, Kelly. Aschbrenner and, I. She. Has, led a lot work around the period, intervention, I've worked with, her for several years and continue to work with her on. Those efforts around engaging. Where we're working a lot now with younger populations, on how to use social media for engaging, this very, high-risk groups so. Apparently. Has. Been a very fun work and yeah. Thank you super. I'm going to assume that as. Participants. Gain access to the, slides. Through, through downloading that. These, might be some interesting names to Google. To, look at other. Research and, papers. Just, as an aside. As, we wrap up I want to remind everybody that we would not be able to provide this. And other webinars, without, the support of Samsa. Both. In funding, and in. Direction. And and. Support, and so, all. Of that is driven by Sansa's. Recognition. Of recovery. The ten, principles and, four dimensions, and. That that inform. Healthier. Lives. For, us all, recovery. To practice, is, a. Service. Is a, project that we'll be wrapping up in September, we've. Been lucky enough to be funded, through. 2. Grant cycles, there. Is a lot, of information available. On. The Samsa website, on and, on YouTube, I posted. A link to our site in the chat and also, you will be able to see it on these slides with. Every, webinar we, provide, additional. Opportunities. For continuing. Continuous. Learning, we. Can only give you a paste, of any, topic, in these webinars because. Of. The. Medium and hopefully. What it does is whet your appetite, and. Makes. You curious and, and. That you'll do some additional reading I would point out that item. Number 5 on this particular slide for, additional. Journal. Articles, and resources. Is an, article. Published by John and. Is. About, naturally, occurring peer support, through social, media so. I know that will be a particular interest, to, a lot of people on this call we. Have a companion, newsletter, I don't know if you've seen it yet if you've not be sure and downloaded, it is in the download material, boxes, on in. Your. Window our, next. Series. Will. Be to do webinars addressing. The role of medication. In recovery. We have some, excellent, presenters, who, are going to provide information the. End of June the early part of July will be providing, those dates very soon and. Also. There are some online courses. That are coming soon where you'll be able to take a deeper, dive into, issues.
Related, Around related. To integrated. Behavioral health and, peer support for, people experiencing. Homelessness. Remember. If you want to get a continuing. Education. Credit. Or a certificate. Of attendance follow. The link that will be popping up in just one moment we, thank you for attending I appreciate. Your support and, your participation, today and, we, hope to see you on on, further. And future. Webinars, have. A great day, thank, you.