Artwork

Sisällön tarjoaa Aphasia Access. Aphasia Access tai sen podcast-alustan kumppani lataa ja toimittaa kaiken podcast-sisällön, mukaan lukien jaksot, grafiikat ja podcast-kuvaukset. Jos uskot jonkun käyttävän tekijänoikeudella suojattua teostasi ilman lupaasi, voit seurata tässä https://fi.player.fm/legal kuvattua prosessia.
Player FM - Podcast-sovellus
Siirry offline-tilaan Player FM avulla!

Episode #120: Navigating Social Media with Dr. Melissa Brunner

47:25
 
Jaa
 

Manage episode 434179054 series 1285244
Sisällön tarjoaa Aphasia Access. Aphasia Access tai sen podcast-alustan kumppani lataa ja toimittaa kaiken podcast-sisällön, mukaan lukien jaksot, grafiikat ja podcast-kuvaukset. Jos uskot jonkun käyttävän tekijänoikeudella suojattua teostasi ilman lupaasi, voit seurata tässä https://fi.player.fm/legal kuvattua prosessia.

Interviewer info

Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.

In this episode, Lyssa Rome interviews Dr. Liss Brunner about how clinicians can incorporate social media into their work with people with acquired brain injuries.

Guest info

Dr Melissa ‘Liss’ Brunner is an early career researcher, lecturer at the University of Sydney, and a certified practicing speech pathologist with over twenty years of experience in supporting adults with swallowing and communication difficulties. Liss has clinical and research expertise in acquired neurologic disorders, particularly working with people who have experienced a stroke or traumatic brain injury (TBI). Diverse research experiences have enabled Liss to build specialist skills in qualitatively driven social media and digital health mixed methods research. Liss’s doctoral research laid the necessary groundwork in understanding the complexity of the issues surrounding people with TBI using social media and how it may (or may not) be addressed during their rehabilitation.

Listener Take-aways

In today’s episode you will:

  • Understand how people with acquired brain injury use social media.
  • Learn about barriers and facilitators for safe social media use after brain injury.
  • Describe how speech-language pathologists can target social media use in rehab for people with acquired brain injury.

Edited Transcript

Lyssa Rome

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that will feature Dr. Melissa or Liss Brunner. Liss is an early-career researcher, lecturer at the University of Sydney, and a certified practicing speech pathologist with over 20 years of experience in supporting adults with swallowing and communication difficulties. Liss has clinical and research expertise in acquired neurologic disorders, particularly working with people who have experienced a stroke or traumatic brain injury. She focuses on qualitatively driven social media and digital health mixed-methods research. Her doctoral research laid the necessary groundwork in understanding the complexity of the issues surrounding people with TBI using social media, and how it may or may not be addressed during their rehabilitation. Dr. Liss Brunner, welcome to the Aphasia Access podcast, I'm so glad to be talking with you.

Dr. Liss Brunner

Thanks so much for having me. I'm really, really excited to be here and talk about one of my favorite things.

Lyssa Rome

Great. So I want to just start by asking you what made you want to study social media use among people with acquired brain injuries? And why is it important to study that?

Dr. Liss Brunner

I suppose I want to start by asking you a question, Lyssa, if that's alright. Okay. So, I mean, do you use social media?

Lyssa Rome

I do use social media.

Dr. Liss Brunner

And what are your favorite types of social media? And why do you use them? Hope you don't mind me asking.

Lyssa Rome

That's fine. So I primarily use two social media platforms. I use Facebook for professional reasons. There's a lot of networking amongst speech pathologists on Facebook. I also use it because I get some exercise classes there, so that's kind of nice. And then I also use Instagram, which I primarily go to to find out about knitting and sewing patterns, and to look for gardening ideas. So it's sort of more hobby-based for me.

Dr. Liss Brunner

Perfect. I love that. I mean, I use Facebook also, but it's mainly to stay in touch with like high school or uni friends and my family. And I also use Instagram, and like you lots of hobby-based stuff. I love watching videos around food. Always makes me hungry, but I still love it. But I also love seeing what people are reading. So I will also quite often post what I've just read and get ideas for books that I could be reading and things like that. And I use it a little bit professionally as well to share what I've been doing and what I've been working on. And I use Twitter or X, as it's now known, probably more so professionally. So I do a lot of sharing about the work that I'm doing in there. But I use a whole heap of other platforms, as well, and kind of all for different reasons.

If you think about it, over 60% of the world's population, actually, are active social media users. And we've just talked about how we use more than one platform. The average is actually seven different social media platforms for people who are active users. And so I got interested in supporting others in using social media, because I realized how integral it was starting to become, in my own life, and for the people around me.

After a brain injury, we know it happens like that in a split second. And it can happen to anyone at any age. And so after those brain injuries occur, people lose lots of their friends. And, you know, their relationships just aren't what they used to be. They're quite often strained. They're not as fun as they used to be. And it can be really hard and devastating, not just for that person, but everyone around them, as well. And so family and close friends can find it really challenging to stay connected in a really meaningful way. And you don't really realize how important that is until it changes. And so, in rehab, I really like to support people to build up their social communication skills, with different people, different places. And I really believe that these days, one of those places we need to consider is social media. It's great to stay connected, you can make new friends, you can practice your communication skills in different ways, you can just kind of be included. So you know, you can tell everyone what's going on in your life after injury, or you can ignore that and just talk about other things like gardening and food and stuff. You can use social media to be what you want it to be. So that's kind of why I got into it. And why I think it's important.

Lyssa Rome

It sounds like you've just described both how people use it before their injury, but then also some changes in use after their injury, for example, and think of in the States—I don't know if this is also true in Australia—there's Caring Bridge and Go Fund Me and other sorts of websites where people are sharing information about their rehab process and about what's going on with someone who's had a brain injury or another kind of illness. Tell us a little bit about how people with acquired brain injuries are using social media.

Dr. Liss Brunner

Yeah, absolutely. I think this is one of the most interesting things to me is that I've interviewed lots of people after a brain injury about how they use social media. And just like many of us, they use a variety of platforms, they have individual preferences, they use them for different purposes. Some prefer Instagram, others prefer Facebook, others prefer online gaming with their friends. Many of them use social media for making and maintaining relationships. So that connection, others use it for altruism, so supporting others in need and sharing their experiences and strategies after a brain injury. But others also use it for advocacy, and activism. So sharing their experiences after brain injury to raise awareness, and reduce stigma that can be associated with it. Others are really active in contacting politicians and advocating for better support services and infrastructure. So they use it for a multitude of reasons. And it's quite often deeply personal, the way in which they do so.

Unfortunately, I did also find out that quite often, people kind of relearning to use social media, sort of through trial and error. So they don't necessarily get lots of support to do it. they've encountered lots of challenges in using it well, so they can have some difficulties with cognitive fatigue, or even just navigating the different social media platforms because they're quite often apt to change, so to speak.

Lyssa Rome

RIght. Yeah. It sounds like they're both some real benefits to people with acquired brain injuries, but then also some risks involved. So maybe you could tell us a little bit more about some of those risks and some of the benefits for people with acquired brain injury using social media?

Dr. Liss Brunner

Yeah, absolutely. I mean, I'll start with the good stuff. So there's lots of advantages to using social media. I mean, obviously, we can use it to create connections, we can totally use it for the entertainment factor—I do all the time. But it's also a huge source of information and news can be an absolutely wonderful platform for sharing information and advocating for awareness. As I've said, I think it's a really great way to share your thoughts and connect with others if you're feeling particularly isolated. And I know that for people after brain injury, who have difficulty with their social communication, there's lots of advantages in particular.

So some people may talk a lot more after their brain injury and some people may feel that they talk a bit too much. And so, you know, platforms like Twitter, or X, that have a shorter amount of space for you to make a post, that might mean that they have an opportunity to really work on limiting how much they say. And likewise, for those who have the opposite issue, and they kind of are more likely to struggle to find things to say, the same platform could be seen as a bit of a relief, because there's less pressure to write really long posts. So, you know, I think there are functions of the different social media platforms that can be really advantageous for people who have difficulties communicating.

For people who have difficulties concentrating in fast-paced conversations in person, the asynchronous approach of social media can be again, provide less pressure, they don't have to think and respond in the moment, they can actually take their time to do that. So that can provide a bit of relief as well. And I find in general, people are way more tolerant around incorrect spelling and grammar and things like that in social media. And you can type words, you can add pictures. I love using GIFs and memes and emoticons. So, you know, all of these things can be used to make communication easier in these platforms. So lots of advantages, I think that we could kind of really draw on to support people.

But obviously, there's also that downside, that darker side of social media, there's lots of risks. And it can be a really tricky space to navigate with and without a brain injury. And there's lots of concern, particularly from clinicians and family and friends around the real and sometimes perceived risks of using social media after a brain injury. So I've spoken to lots of clinicians and family members over the years. And they often tell me about how they're really worried about people being fairly vulnerable online, that they're at risk of being exploited, that they may ruin their own reputation by some of the things that they're saying online.

And quite often, as clinicians, I suppose we can act as gatekeepers in a way. And so there's often this really big focus on our duty of care in the clinical context, because we want to prevent harm, we want people to do well and not actually be hurt more. And so we can be really risk averse, I suppose. There can be this real sense of responsibility for minimizing all of the risks. And so there's lots of issues around people getting fixated on social media, and that might lead to cognitive fatigue. It could be that they're having negative mental health or emotional effects of what they're seeing in social media. They could start withdrawing from in-person interactions because they're spending a lot of time online.

I mentioned reputation management. So potentially people would say something online that will influence how other people perceive them. So whilst people are in post traumatic amnesia after a traumatic brain injury, they may regret posting something. Others have reported that their family members tell them that they're saying inappropriate things online and that's negatively affected their relationships. And sometimes it's affected their employment opportunities down the track as well. Others have had difficulties managing their finances and security due to difficulties with disinhibition and impulsivity. And so there's lots of concerns in particular around things like cyber scams and, and things like that.

Lyssa Rome

It sounds like the risks that a lot of us are faced with when we're using social media platforms. But even more so right, because of some of the issues specific to people with brain injuries that you've just described?

Dr. Liss Brunner

Absolutely.

Lyssa Rome

I'm wondering what kind of barriers and facilitators there are to successful social media use? You mentioned clinicians, reluctance, or sort of concern about the risks? What are some of the other things that we should be thinking about?

Dr. Liss Brunner

Yeah, absolutely. I mean, there's lots of barriers. But there's also lots of facilitators as well, which is good. I've spoken about some of the risks, but some of the other barriers are sometimes quite immediate. So some people might have physical barriers to using social media. So their vision might have changed, their hand mobility, and fine motor control might have changed, or they might not be able to independently go and get their device. And so they might need someone to go and get it for them. Others may not have devices, or reliable internet access, particularly if they're in a hospital, sometimes internet access is restricted. So there's those actual accessibility issues.

In terms of the changes in cognitive communication, I think, a lot of what we can see in in person interactions—so when people are having a face to face conversation—those sorts of changes we see after a brain injury can often be influencing their online interactions just as much. So for example, after a traumatic brain injury, inattention, and being easily distracted, can be quite an issue for many. And so you might see this where someone will start responding to a post, but they'll get distracted, and they'll send, you know, a message that they either didn't mean to send or it wasn't complete, or it gets misinterpreted. And it can just unravel quite quickly.

Sometimes, you know, emotional control changes quite often after an acquired brain injury. So managing your feelings can be really challenging. So some people can get really overloaded by the amount of information in their social media feeds and timelines. Or they might get really overwhelmed when they're seeing negative or sad posts. Like, obviously, we're seeing lots of sad things and disturbing things in the news, in particular, online at the moment, there's lots of conflict around the world. So being able to manage your feelings can be really challenging if you're not conscious about the influence social media posts can have on you.

Sometimes, you know, there's issues in impulse control. And so some people will get sent friend requests and they will click accept without thinking, Oh, actually, do I know this person? Or do I want to have this person as a friend or, you know, posting before you think about what you're saying and how someone's going to take that and what the potential repercussions might be? It could be that, you know, people have difficulty finding the right words and that they may put words in that they're not wanting To say, and again, that can get misinterpreted.

The other thing is that there's lots of information. And so it's quite hard to find and constantly changing. And I feel like that can increase the demands on people's memory, and how they sort through and organize information. So that can be overwhelming and challenging as well.

On the flip side, there's lots of facilitators that we can harness for good to combat some of these things. And during my PhD, I identified five factors that influence social media use after a brain injury. And sometimes these things are barriers, and sometimes they're facilitators. So I think it's really quite helpful to think about things in this way.

And so the first factor is purpose. So it's really important to think about, if someone is motivated to use social media, what's motivating for them? It could be that they are wanting to practice their communication. It could be that they are wanting to connect. They might want to find a romantic partner. They might want to figure out who they are now, after their brain injury. It could be just to fill in time, right? So purpose really influences how someone uses social media.

The second factor, I think, relates to knowledge and experience. And so it's not just that person with a brain injury, but also the people around them. So some of the barriers can be that people aren't really clear on how to support people to use social media. And that could be because of their own experience and ability, and confidence. So all of those things can really influence how you use social media.

The big one, that third factor is caution, I think, you know, it's really critical to be aware of the risks, which I've spoken about, and how to navigate them.

The fourth factor is networks. And so it's really kind of thinking about who is your online network of people? So who do you want to contact? Who do you maybe not want to stay in contact with? And increasing opportunities to have really successful interactions with those people.

And the fifth concept is really around support. So trying to find structures that influence success in social media interactions. So giving people practical supports and resources, whether that's an actual person, or whether it's a training program, or practice, with someone setting them up with a PR so they can have someone to practice with regularly.

I think they're the five different factors that really influence how someone who's going to use social media, and whether they use it well, safely. And meaningfully, I suppose, because that's what you want it to be. The other thing that I think is really important, from a clinician perspective, in terms of facilitating use is to kind of be proactive. So rather than being reactive, and just only stepping in when problems happen is actually being a person that can support people with brain injury to use social media and asking those questions. So I feel like some of the research that I've been doing is really kind of been critical to try and find guidance for clinicians on how to do that, and how to have those conversations.

So I spoke about those five different factors. I reckon if, for example, you were wanting to think about someone's purpose in social media, really, you just need to identify what platforms they want to use? Why do they want to use them? What's going to be really meaningful for them? So writing that down and thinking: Okay, who are you connecting with in that? Why do you want to use it? How can we make that better for you? So it's a really nice way to just start those conversations.

Lyssa Rome

When I think about clinically sort of getting to know someone, part of it is who are you communicating with? Like, who are you having conversations with? And if we think a little bit more broadly, you know, it's not just conversations in person or over the phone. And so to take an inventory that really reflects the person's actual communication across all different kinds of settings, is really important. I'm curious how people with acquired brain injuries are using these different social media platforms, you sort of mentioned some of them along the way, as you've been discussing the risks and the benefits, etc. But I just wonder if you could say a little bit more about that.

Dr. Liss Brunner

Yeah, I mean, we've been doing a few different little studies looking at how brain injury is spoken about, and who's using it in different platforms. So we've done a study, study looking at Twitter, it was Twitter, then it's now called X, I suppose. But back then it was Twitter. And we kind of really just explored what was being said about brain injury. And actually, I found there were actually lots of people with brain injury using the platform to connect with others to share issues around their health, life after their injury, raising awareness, and also as a source of inspiration and hope. So both giving and receiving those messages. So that was really nice.

And then we've recently actually just completed some studies where we looked similarly, at YouTube and Instagram. And in both platforms, it was really clear that this is a space where people are sharing their stories of change. And because of the inherent functions of the platforms, they can share content that they make, or reshare, and a lot of it is quite visual. It really gives that person who's sharing the content, a lot more control over how they tell their stories. And I love seeing and hearing how people use social media to tell their stories. We're all so different. And even though there are similarities amongst the stories that people are telling about their brain injury, there's so much personalization and individuality. It's fantastic to see.

In some of the interviews that I've done, you know, one person told me about how they use Instagram to share their photos of the world so that they were a photographer before their injury. And since their injury, they see the world differently. And they're taking very different photos.

So I think everyone's using different platforms the way in which they want to, yeah, it's super interesting. Others have made using social media their vocation, so as a way of connecting with others who've had a brain injury and sharing, you know, tips and ideas to support recovery. And so that's kind of their job, and it's giving them that sense of purpose. Not just in using social media, but purpose in life and giving back and being able to feel like they have a sense of belonging and contribution. So, yeah, I find it super interesting. I love it.

Lyssa Rome

Well, and one of the reasons that I was really drawn to your work and wanted to talk with you on this podcast is that it seems like at its heart, what you've been studying and working on is promoting and enabling life participation for people with acquired brain injuries for whom social media is an important life activity—either was already before the injury or is now after the injury. And, to me, it's just, it's so meaningful for people and to sort of turn our attention toward social media in this way, I think is great. So it makes me wonder, to what extent are rehab professionals, speech language pathologists and others, addressing social media use with their clients or their patients?

Dr. Liss Brunner

This is a really hard answer to give. Because I'm speaking generally. And I know that, you know, we are very individual as clinicians as well. But when I used to talk about this, you know, I started more than a decade ago in this space, I would ask clinicians when I was talking at presentations, who's worked with clients on using social media, and I would maybe have one person put their hand up. Now, when I ask that question, the response is actually very different, and I would say, you know, the majority of people would indicate that they've worked on using social media in some way, shape, or form.

But I feel like we don't necessarily have lots of guidance on how to do that well. And so lots of clinicians have said to me that they feel kind of lost when it comes to using social media. Not everyone uses social media and some of us have our preferred platforms that we feel comfortable with and don't know anything about some of the other platforms, right? Some of us say using social media is just a bit of fun. And it's, you know, a bit of a distraction from real life. So we have lots of attitudes and beliefs around it.

And there's lots of challenges in addressing social media, because as I said, the platforms are constantly changing. And it's really hard to stay up-to-date. And so lots of people are really uncertain about all of those factors, and then they are, we've also got all of these medical and legal responsibilities, and we don't know where our boundaries are, in terms of navigating risks— whether we should be gatekeepers, or whether we should be just supporting people with information and education and coming in and supporting them if problems happen. Lots of people just basically want guidance, was what I heard. They want to know when to introduce the use of social media. They want to know when to let go of control of how people use it, and how to encourage really positive interactions. I feel like a lot of people have told me that because they're so uncertain, they tend to be mostly restrictive, rather than proactive. And so that restrictive practice occurs in lots of different ways.

So it could be encouraging, and helping families to keep devices at home and away from people who have a brain injury. It could be that they give people the devices, but they limit the internet connectivity, so they can't use them functionally. Or it could be that they manipulate the privacy settings. So it allows people just to lurk and watch other people's posts, but doesn't let them post and interact. And so, you know, there's often issues where family members are encouraged to monitor social media posts for appropriate content and things like that. And I find that's, you know, not ideal for anyone, really, no one wants to have to do that. And no one wants that to happen to them. And it can create lots more barriers to autonomy. I'm pretty sure if my parents were telling me what to do and what not to do in social media, I'd not have a great response. And I also feel if I tried to tell my kids what to do and what not to do, they'd probably go straight out and do what I told them not to do. Because as if I would not because I'm old. Right? And not cool. There’s probably another word for cool now that I don't know.

You know, I think it's, it's really personal. It's tricky to navigate. And as clinicians, we've got to be really clear about what our attitudes and beliefs are and how they influence what we perceive as appropriate or inappropriate and how we navigate those conversations. I love referring people to the Mark Ylvisaker and Tim Feenye paper that's about Dobermans and Poodles. Because it really does push people to think about how we interact and influence people in our rehabilitation practices. So I think as clinicians, we want to be proactive, but we're just not quite clear on how we should do it.

Lyssa Rome

In one of your papers, you wrote about how we as speech language pathologists can move from a sort of paternalistic attitude toward supporting the autonomy of our clients with acquired brain injury. And it's something I think about a lot, not necessarily just in this context of social media, but in all other kinds of ways. And I'm wondering if you could say a little bit more about that, and about how SLPs and other rehab professionals should be thinking about including social media training and the work we do?

Dr. Liss Brunner

Yeah, it's really tricky. Because, you know, we don't want to be restrictive. We don't want to be gatekeepers, we want to be supportive. And I feel like sometimes when we don't have guidance, from our evidence in the research or practical resources, we can flounder a little bit, particularly when we know there are so many risks associated with something like using social media. I think we can probably all acknowledge that restriction isn't the answer, because it doesn't set people up for real life. It doesn't give them opportunities to learn from mistakes, which is what we would do a lot of the time in real life.

I think one of the things that we can really do is harness the knowledge and skills of the person themselves, to help us as clinicians to know more about how they want to use social media, which platforms they're interested in, particularly if we've got no clue about how to use it ourselves. And so this could be a way to really educate ourselves, and kind of have more of a collaborative approach with that person. So you can set goals together, you can identify what's going to look like successful social media is to that person. How can we use what they did before their brain injury to guide us in terms of, is this something you want to get back to? Or do you want to do something different now? Those sorts of things. We can look for ways to provide them opportunities for participation, and give them some instructions on what might work really well. Let them go and try that. Give them education and really constructive feedback, so that they're working towards those positive interactions and trying to mitigate those risks in that really proactive way. Obviously, I think we need some policy around this, and guidance so that we can actively support people.

But I think probably one of the first things that we need to do is address social media goals in rehabilitation. And these can be informed by other successful brain injury rehabilitation approaches, you know, so we've got lots of information on functional rehabilitation, we know that more meaningful rehab is motivating and more likely to have better outcomes. And we could adopt strategies that have been used in rehab that support other activities that we feel are higher risk. So always I think of return to driving. You know, we support people, occupational therapists, support people to return to drive and I think that's inherently really dangerous. But we do it because we see it as a really important goal for people to return to after injury. I kind of feel that social media is kind of in a similar vein, we know there's risks, let's put education and practice in place to support them to do well.

Lyssa Rome

Speaking of education and practice, you've created a training program for people with acquired brain injuries on how they can start to successfully use social media. So can you describe that and tell us a little bit about that program?

Dr. Liss Brunner

Yeah, I mean, I worked as a clinician for many, many years before I got suckered into research and fell in love with it. And so I always want to think about the practical implications of the research that I'm doing, I want to provide resources and guidance. And so I was very lucky to be able to work with the team at Sydney Uni, and the University of Technology in Sydney, and brain Injury Australia. We were able to source some funding through a grant, which was fabulous. And we had this larger project called the Social Brain Toolkit. And part of that was developing social-ABI-lity. And so it meant that we were able to work with people who've had a brain injury, some family members, some clinicians, and other researchers to design this social-ABI-lity program. And essentially, it's a free online training program on how to use social media after brain injury.

Very simply, it's designed so that people with a brain injury can do it themselves, or they can do it with family or a friend or a clinician to support them. It takes about two to three hours to work through everything. And there's four modules, and so the modules are: What is social media; staying safe in social media; how do I use social media; and who can I connect with in social media. And we've really used metacognitive principles to support people to make a plan for using social media in a way that really suits them. And so we wanted to give them ideas on staying safe. When using social media and cyber safety, even those, there's one module on staying safe. Cyber safety is actually threaded through all four modules, because it was such a priority for everyone that we spoke to. And it just provides people with opportunities to learn about using social media, and really promoting the idea of finding social media buddies and building up a support network in social media. So there's written info, there's videos, there's questions to work through, there's a printable worksheet, so people can write down and keep the messages of the four modules. And things like that.

We've run a pilot study, so that people could test out the prototype. And they found it was quite valuable. They thought it was really engaging and functional. They also told us what they didn't think was working. So we tweaked it, and hopefully made it better. And then we actually piloted that again, because we knew that just the training by itself was probably not going to achieve the best outcomes possible. We wanted to know whether group intervention would help. So we kind of got people to do the social-ABI-lity program, and also a peer practice group. So we set up the social-ABI-lity plus a social media practice group kind of thing. We set up some Facebook groups, because Facebook is one of the social media platforms that lets you set up a group and have private conversations. But you also don't necessarily have to be friends with everyone. So it meant people could keep their distance if they wanted to.

In this study, we ran two groups for 12 weeks. And we basically just gave them stuff to talk about and connect with in this Facebook group. We also added in occasional meetups on Zoom so that people could meet each other face-to-face, even though it was online. So, you know, at the same time, they could have conversations and get to know each other in that way and see each other's faces. And the two groups found that this was really beneficial. So they had more confidence in using social media and they were just thinking about using it in a very different way.

The other thing that we thought about though was we know that there's just this connection between people who've actually lived the path, rather than, you know, being directed by someone like me who hasn't raised this difference in connection. And so we wanted to know whether having a peer moderated group would actually change things. And so we've recently just run a peer-moderated group. And so we kind of sweet-talked two of our previous participants who were quite active in the groups and said, “Do you want to be part of our research team? Would you like to moderate a group? And we'll see what happens.” And so we negotiated with these two awesome people. And they ran the group for eight weeks. So we shortened it a little bit just to make it more feasible and test it out. And before we started the group, we met with our two peer moderators, and said, “What do you feel comfortable doing? What don't you feel comfortable doing?” And we negotiated our roles before we even started, and even though they weren't significant changes in confidence, or any of the quantitative data that we collected in terms of quality of life and things like that, the conversations that people had, were just, I'm going to use one of the moderators words “profound.” They were so different, they were more poignant, and deeper, the conversations that they had in these peer-moderated group, and the reflections that all of the participants had really showed that they connected on a really different level, which was quite lovely. Again, they found it was all feasible and engaging. But there was something about that added element of the peer moderators that made it extra awesome for the people involved, as well as for the peer moderators themselves, they just found that they had improved confidence and improved sense of self for being involved in it. So it was that sense of giving back that really made that group scene, which was really lovely.

Lyssa Rome

I think that that's so exciting. And it makes me wonder what else you're working on? And what's coming next.

Dr. Liss Brunner

Yeah, I mean, there's so many ideas, and it's just a matter of actually making them happen. Lyssa, at the moment, were actually designing a social media communication assessment tool that we hope will really help not just clinicians, but also people with brain injury, to start this process of figuring out their purpose in using social media and what their goals might be. And so we're designing it with people with brain injury and clinicians around the world. So that hopefully, it will be really relevant to everyone to just start those conversations. So we hope to have the first version of this available to share freely, hopefully, by the end of the year—next year, definitely. But I'm really excited to see how that pans out. That's the first next step.

Lyssa Rome

Yeah. I think that that is really exciting. And it it, it reminds me of something else that you've written about, which is how SLPs can almost assess their own social media use or think about it, and step back and think about it in order to better help their clients in their social media goals. And I'm wondering if you could explain a little bit about that for our listeners.

Dr. Liss Brunner

This is some work that I actually really loved doing. I think one of the things that can really support how we're able to assist others in using social media is to be really aware of our own use of social media. And I think in this particular paper that you're referring to, it's like we use the metaphor of a garden. And we kind of encouraged people to think about their own use and purpose of using social media. And we used this very arty based approach to thinking about our professional social media identity. And so we kind of describe this process of visualizing your own social media garden. And so it's a metaphor you can use to think about your purpose and build a strategy around how you're going to achieve that. And I think it can be used to get kind of like this real understanding of what social media really means to you, and identify aspects of your own professional identity that are important and could be enriched through using social media. So I think, you know, if you're interested in not just how you use social media professionally, but also how you can help people clinically, in this paper, we really tried to provide another resource to outline strategies for using different techniques to build up your professional and clinical practice.

Lyssa Rome

For me, as a clinician, I think one of the takeaways from this conversation and from reading your articles, which we will link to in the show notes, is this idea that we should be reflecting on our own social media use, and our own assumptions about social media use and its risks and its benefits. What other takeaways should listeners be thinking about—things that they can implement in their own clinical practice?

Dr. Liss Brunner

I couldn't agree more, Lyssa. I think reflecting on your own social media use is really powerful. I think it's a really good place to start. And I think then you can just start by having the conversation with people asking about why they use social media. Which platforms are you interested in? What do you want to get out of using social media? Who do you want to connect with? Just having those conversations, I think will give you very rich data to start making some decisions, having ideas around what goals could be targeted. I think, as you said, we'll put the link to some of my papers. But certainly the facilitators that I've mentioned in the AJSLP paper, can be kind of those five factors that can really guide you in thinking about the different aspects to consider around social media use. So you can kind of use that as a bit of a guide, until we're able to create and trial new resources to support that further.

I think there's probably three key resources that I typically recommend that people check out if they want to support people to use social media. I think the obvious one that I'll point out is the social-ABI-ity program. And we'll pop the link in there. I think the other thing that I'd like to mention is another free online training program called Cyberability. And this has actually been designed by some colleagues here in Australia at Monash University, led by Dr. Kate Gould. But it's been built in collaboration, again, with people with brain injury, but who have also been scammed online. So they've got that lived experience. And they contribute their strategies and tips and what they've learned from going through that experience in this training. So I'll make sure that we get the Cyberability training link for you as well. The other resource that I find really useful here in Australia, is that we've got the Australian eSafety Commissioner website. And it's actually been supported by our government to provide lots of advice and resources on staying safe online. And I think, for kids in particular, I can be really handy. So I don't particularly work with kids. But I find that some of the resources there are really good if you do work with children. And there's actually an eSafety guide. And so it actually lists all of the different social media platforms and talks about how to protect your information and report harmful content on those particular platforms. So I think that's a really handy tool for people to know about as well.

Lyssa Rome

Those seem very useful. Thank you for bringing those to us. And again, we'll link to those resources. I am so glad to have had this chance to talk with you and I'm really looking forward to all of the exciting things that you're working on now. Dr. Liss Brunner, thanks so much for being a guest on this podcast.

Dr. Liss Brunner

Thank you so much for having me, Lyssa. It's been wonderful. I could talk about this stuff forever and a day. So I'm really pleased that we've had this opportunity. Thank you.

Lyssa Rome

And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.

Additional Resources

Contact Liss: melissa.brunner@sydney.edu.au

eSafety Commissioner: www.esafety.gov.au/

eSafety Guide to Staying Safe Online: www.esafety.gov.au/kids/I-want-hel…ing-safe-online

Cyberability - free training on how to stay scam safe after brain injury: www.cyberability.org.au/

social-ABI-lity - free training on how to use social media after brain injury: abi-communication-lab.sydney.edu.au/courses…I-lity/

Brunner, M., Hemsley, B., Togher, L., Dann, S., & Palmer, S. (2021). Social media and people with traumatic brain injury: a metasynthesis of research informing a framework for rehabilitation clinical practice, policy, and training. American journal of speech-language pathology, 30(1), 19-33. https://doi.org/10.1044/2020_AJSLP-20-00211 *Email Liss for a copy*

Brunner M, Rietdijk R, Summers K, Southwell K, Avramovic P, Power E, Rushworth N, Togher L (2024) ‘It gives you encouragement because you're not alone’: A pilot study of a multi-component social media skills intervention for people with acquired brain injury. (Invited paper for a Special Issue on SLT/P clinical management of traumatic brain injury across the lifespan), 59, 543–558. https://doi.org/10.1111/1460-6984.12806

Brunner M, Rietdijk R, Avramovic P, Power E, Miao M, Rushworth N, MacLean L, Brookes AM, Togher L (2023). Developing social-ABI-lity: an online course to support safe use of social media for connection after acquired brain injury. AJSLP (Invited paper for a Special Issue of Select Papers from the International Cognitive-Communication Disorders Conference), 32(2S), 924-940. https://doi.org/10.1044/2022_AJSLP-22-00099

Brunner M, Rietdijk R, Togher L (2022). Training resources targeting social media skills: A scoping review to inform rehabilitation for people who have an acquired brain injury. JMIR, 24(4), e35595. https://www.jmir.org/2022/4/e35595/

Brunner M, Bryant L, Turnbull H, Hemsley B (2022). Developing and sustaining a social media ecosystem in speech-language pathology: Using innovative qualitative methods to visualise and cultivate a social media garden. IJSLP (Special Issue on New perspectives, insights, and practices: Qualitative research innovations in Speech-Language Pathology), 24 (5), 558-569. https://doi.org/10.1080/17549507.2022.2069860 *Email Liss for a copy*

Ylvisaker, M., & Feeney, T. (2000). Reflections on Dobermanns, poodles, and social rehabilitation for difficult-to-serve individuals with traumatic brain injury. Aphasiology, 14(4), 407–431. https://doi.org/10.1080/026870300401432

  continue reading

100 jaksoa

Artwork
iconJaa
 
Manage episode 434179054 series 1285244
Sisällön tarjoaa Aphasia Access. Aphasia Access tai sen podcast-alustan kumppani lataa ja toimittaa kaiken podcast-sisällön, mukaan lukien jaksot, grafiikat ja podcast-kuvaukset. Jos uskot jonkun käyttävän tekijänoikeudella suojattua teostasi ilman lupaasi, voit seurata tässä https://fi.player.fm/legal kuvattua prosessia.

Interviewer info

Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.

In this episode, Lyssa Rome interviews Dr. Liss Brunner about how clinicians can incorporate social media into their work with people with acquired brain injuries.

Guest info

Dr Melissa ‘Liss’ Brunner is an early career researcher, lecturer at the University of Sydney, and a certified practicing speech pathologist with over twenty years of experience in supporting adults with swallowing and communication difficulties. Liss has clinical and research expertise in acquired neurologic disorders, particularly working with people who have experienced a stroke or traumatic brain injury (TBI). Diverse research experiences have enabled Liss to build specialist skills in qualitatively driven social media and digital health mixed methods research. Liss’s doctoral research laid the necessary groundwork in understanding the complexity of the issues surrounding people with TBI using social media and how it may (or may not) be addressed during their rehabilitation.

Listener Take-aways

In today’s episode you will:

  • Understand how people with acquired brain injury use social media.
  • Learn about barriers and facilitators for safe social media use after brain injury.
  • Describe how speech-language pathologists can target social media use in rehab for people with acquired brain injury.

Edited Transcript

Lyssa Rome

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that will feature Dr. Melissa or Liss Brunner. Liss is an early-career researcher, lecturer at the University of Sydney, and a certified practicing speech pathologist with over 20 years of experience in supporting adults with swallowing and communication difficulties. Liss has clinical and research expertise in acquired neurologic disorders, particularly working with people who have experienced a stroke or traumatic brain injury. She focuses on qualitatively driven social media and digital health mixed-methods research. Her doctoral research laid the necessary groundwork in understanding the complexity of the issues surrounding people with TBI using social media, and how it may or may not be addressed during their rehabilitation. Dr. Liss Brunner, welcome to the Aphasia Access podcast, I'm so glad to be talking with you.

Dr. Liss Brunner

Thanks so much for having me. I'm really, really excited to be here and talk about one of my favorite things.

Lyssa Rome

Great. So I want to just start by asking you what made you want to study social media use among people with acquired brain injuries? And why is it important to study that?

Dr. Liss Brunner

I suppose I want to start by asking you a question, Lyssa, if that's alright. Okay. So, I mean, do you use social media?

Lyssa Rome

I do use social media.

Dr. Liss Brunner

And what are your favorite types of social media? And why do you use them? Hope you don't mind me asking.

Lyssa Rome

That's fine. So I primarily use two social media platforms. I use Facebook for professional reasons. There's a lot of networking amongst speech pathologists on Facebook. I also use it because I get some exercise classes there, so that's kind of nice. And then I also use Instagram, which I primarily go to to find out about knitting and sewing patterns, and to look for gardening ideas. So it's sort of more hobby-based for me.

Dr. Liss Brunner

Perfect. I love that. I mean, I use Facebook also, but it's mainly to stay in touch with like high school or uni friends and my family. And I also use Instagram, and like you lots of hobby-based stuff. I love watching videos around food. Always makes me hungry, but I still love it. But I also love seeing what people are reading. So I will also quite often post what I've just read and get ideas for books that I could be reading and things like that. And I use it a little bit professionally as well to share what I've been doing and what I've been working on. And I use Twitter or X, as it's now known, probably more so professionally. So I do a lot of sharing about the work that I'm doing in there. But I use a whole heap of other platforms, as well, and kind of all for different reasons.

If you think about it, over 60% of the world's population, actually, are active social media users. And we've just talked about how we use more than one platform. The average is actually seven different social media platforms for people who are active users. And so I got interested in supporting others in using social media, because I realized how integral it was starting to become, in my own life, and for the people around me.

After a brain injury, we know it happens like that in a split second. And it can happen to anyone at any age. And so after those brain injuries occur, people lose lots of their friends. And, you know, their relationships just aren't what they used to be. They're quite often strained. They're not as fun as they used to be. And it can be really hard and devastating, not just for that person, but everyone around them, as well. And so family and close friends can find it really challenging to stay connected in a really meaningful way. And you don't really realize how important that is until it changes. And so, in rehab, I really like to support people to build up their social communication skills, with different people, different places. And I really believe that these days, one of those places we need to consider is social media. It's great to stay connected, you can make new friends, you can practice your communication skills in different ways, you can just kind of be included. So you know, you can tell everyone what's going on in your life after injury, or you can ignore that and just talk about other things like gardening and food and stuff. You can use social media to be what you want it to be. So that's kind of why I got into it. And why I think it's important.

Lyssa Rome

It sounds like you've just described both how people use it before their injury, but then also some changes in use after their injury, for example, and think of in the States—I don't know if this is also true in Australia—there's Caring Bridge and Go Fund Me and other sorts of websites where people are sharing information about their rehab process and about what's going on with someone who's had a brain injury or another kind of illness. Tell us a little bit about how people with acquired brain injuries are using social media.

Dr. Liss Brunner

Yeah, absolutely. I think this is one of the most interesting things to me is that I've interviewed lots of people after a brain injury about how they use social media. And just like many of us, they use a variety of platforms, they have individual preferences, they use them for different purposes. Some prefer Instagram, others prefer Facebook, others prefer online gaming with their friends. Many of them use social media for making and maintaining relationships. So that connection, others use it for altruism, so supporting others in need and sharing their experiences and strategies after a brain injury. But others also use it for advocacy, and activism. So sharing their experiences after brain injury to raise awareness, and reduce stigma that can be associated with it. Others are really active in contacting politicians and advocating for better support services and infrastructure. So they use it for a multitude of reasons. And it's quite often deeply personal, the way in which they do so.

Unfortunately, I did also find out that quite often, people kind of relearning to use social media, sort of through trial and error. So they don't necessarily get lots of support to do it. they've encountered lots of challenges in using it well, so they can have some difficulties with cognitive fatigue, or even just navigating the different social media platforms because they're quite often apt to change, so to speak.

Lyssa Rome

RIght. Yeah. It sounds like they're both some real benefits to people with acquired brain injuries, but then also some risks involved. So maybe you could tell us a little bit more about some of those risks and some of the benefits for people with acquired brain injury using social media?

Dr. Liss Brunner

Yeah, absolutely. I mean, I'll start with the good stuff. So there's lots of advantages to using social media. I mean, obviously, we can use it to create connections, we can totally use it for the entertainment factor—I do all the time. But it's also a huge source of information and news can be an absolutely wonderful platform for sharing information and advocating for awareness. As I've said, I think it's a really great way to share your thoughts and connect with others if you're feeling particularly isolated. And I know that for people after brain injury, who have difficulty with their social communication, there's lots of advantages in particular.

So some people may talk a lot more after their brain injury and some people may feel that they talk a bit too much. And so, you know, platforms like Twitter, or X, that have a shorter amount of space for you to make a post, that might mean that they have an opportunity to really work on limiting how much they say. And likewise, for those who have the opposite issue, and they kind of are more likely to struggle to find things to say, the same platform could be seen as a bit of a relief, because there's less pressure to write really long posts. So, you know, I think there are functions of the different social media platforms that can be really advantageous for people who have difficulties communicating.

For people who have difficulties concentrating in fast-paced conversations in person, the asynchronous approach of social media can be again, provide less pressure, they don't have to think and respond in the moment, they can actually take their time to do that. So that can provide a bit of relief as well. And I find in general, people are way more tolerant around incorrect spelling and grammar and things like that in social media. And you can type words, you can add pictures. I love using GIFs and memes and emoticons. So, you know, all of these things can be used to make communication easier in these platforms. So lots of advantages, I think that we could kind of really draw on to support people.

But obviously, there's also that downside, that darker side of social media, there's lots of risks. And it can be a really tricky space to navigate with and without a brain injury. And there's lots of concern, particularly from clinicians and family and friends around the real and sometimes perceived risks of using social media after a brain injury. So I've spoken to lots of clinicians and family members over the years. And they often tell me about how they're really worried about people being fairly vulnerable online, that they're at risk of being exploited, that they may ruin their own reputation by some of the things that they're saying online.

And quite often, as clinicians, I suppose we can act as gatekeepers in a way. And so there's often this really big focus on our duty of care in the clinical context, because we want to prevent harm, we want people to do well and not actually be hurt more. And so we can be really risk averse, I suppose. There can be this real sense of responsibility for minimizing all of the risks. And so there's lots of issues around people getting fixated on social media, and that might lead to cognitive fatigue. It could be that they're having negative mental health or emotional effects of what they're seeing in social media. They could start withdrawing from in-person interactions because they're spending a lot of time online.

I mentioned reputation management. So potentially people would say something online that will influence how other people perceive them. So whilst people are in post traumatic amnesia after a traumatic brain injury, they may regret posting something. Others have reported that their family members tell them that they're saying inappropriate things online and that's negatively affected their relationships. And sometimes it's affected their employment opportunities down the track as well. Others have had difficulties managing their finances and security due to difficulties with disinhibition and impulsivity. And so there's lots of concerns in particular around things like cyber scams and, and things like that.

Lyssa Rome

It sounds like the risks that a lot of us are faced with when we're using social media platforms. But even more so right, because of some of the issues specific to people with brain injuries that you've just described?

Dr. Liss Brunner

Absolutely.

Lyssa Rome

I'm wondering what kind of barriers and facilitators there are to successful social media use? You mentioned clinicians, reluctance, or sort of concern about the risks? What are some of the other things that we should be thinking about?

Dr. Liss Brunner

Yeah, absolutely. I mean, there's lots of barriers. But there's also lots of facilitators as well, which is good. I've spoken about some of the risks, but some of the other barriers are sometimes quite immediate. So some people might have physical barriers to using social media. So their vision might have changed, their hand mobility, and fine motor control might have changed, or they might not be able to independently go and get their device. And so they might need someone to go and get it for them. Others may not have devices, or reliable internet access, particularly if they're in a hospital, sometimes internet access is restricted. So there's those actual accessibility issues.

In terms of the changes in cognitive communication, I think, a lot of what we can see in in person interactions—so when people are having a face to face conversation—those sorts of changes we see after a brain injury can often be influencing their online interactions just as much. So for example, after a traumatic brain injury, inattention, and being easily distracted, can be quite an issue for many. And so you might see this where someone will start responding to a post, but they'll get distracted, and they'll send, you know, a message that they either didn't mean to send or it wasn't complete, or it gets misinterpreted. And it can just unravel quite quickly.

Sometimes, you know, emotional control changes quite often after an acquired brain injury. So managing your feelings can be really challenging. So some people can get really overloaded by the amount of information in their social media feeds and timelines. Or they might get really overwhelmed when they're seeing negative or sad posts. Like, obviously, we're seeing lots of sad things and disturbing things in the news, in particular, online at the moment, there's lots of conflict around the world. So being able to manage your feelings can be really challenging if you're not conscious about the influence social media posts can have on you.

Sometimes, you know, there's issues in impulse control. And so some people will get sent friend requests and they will click accept without thinking, Oh, actually, do I know this person? Or do I want to have this person as a friend or, you know, posting before you think about what you're saying and how someone's going to take that and what the potential repercussions might be? It could be that, you know, people have difficulty finding the right words and that they may put words in that they're not wanting To say, and again, that can get misinterpreted.

The other thing is that there's lots of information. And so it's quite hard to find and constantly changing. And I feel like that can increase the demands on people's memory, and how they sort through and organize information. So that can be overwhelming and challenging as well.

On the flip side, there's lots of facilitators that we can harness for good to combat some of these things. And during my PhD, I identified five factors that influence social media use after a brain injury. And sometimes these things are barriers, and sometimes they're facilitators. So I think it's really quite helpful to think about things in this way.

And so the first factor is purpose. So it's really important to think about, if someone is motivated to use social media, what's motivating for them? It could be that they are wanting to practice their communication. It could be that they are wanting to connect. They might want to find a romantic partner. They might want to figure out who they are now, after their brain injury. It could be just to fill in time, right? So purpose really influences how someone uses social media.

The second factor, I think, relates to knowledge and experience. And so it's not just that person with a brain injury, but also the people around them. So some of the barriers can be that people aren't really clear on how to support people to use social media. And that could be because of their own experience and ability, and confidence. So all of those things can really influence how you use social media.

The big one, that third factor is caution, I think, you know, it's really critical to be aware of the risks, which I've spoken about, and how to navigate them.

The fourth factor is networks. And so it's really kind of thinking about who is your online network of people? So who do you want to contact? Who do you maybe not want to stay in contact with? And increasing opportunities to have really successful interactions with those people.

And the fifth concept is really around support. So trying to find structures that influence success in social media interactions. So giving people practical supports and resources, whether that's an actual person, or whether it's a training program, or practice, with someone setting them up with a PR so they can have someone to practice with regularly.

I think they're the five different factors that really influence how someone who's going to use social media, and whether they use it well, safely. And meaningfully, I suppose, because that's what you want it to be. The other thing that I think is really important, from a clinician perspective, in terms of facilitating use is to kind of be proactive. So rather than being reactive, and just only stepping in when problems happen is actually being a person that can support people with brain injury to use social media and asking those questions. So I feel like some of the research that I've been doing is really kind of been critical to try and find guidance for clinicians on how to do that, and how to have those conversations.

So I spoke about those five different factors. I reckon if, for example, you were wanting to think about someone's purpose in social media, really, you just need to identify what platforms they want to use? Why do they want to use them? What's going to be really meaningful for them? So writing that down and thinking: Okay, who are you connecting with in that? Why do you want to use it? How can we make that better for you? So it's a really nice way to just start those conversations.

Lyssa Rome

When I think about clinically sort of getting to know someone, part of it is who are you communicating with? Like, who are you having conversations with? And if we think a little bit more broadly, you know, it's not just conversations in person or over the phone. And so to take an inventory that really reflects the person's actual communication across all different kinds of settings, is really important. I'm curious how people with acquired brain injuries are using these different social media platforms, you sort of mentioned some of them along the way, as you've been discussing the risks and the benefits, etc. But I just wonder if you could say a little bit more about that.

Dr. Liss Brunner

Yeah, I mean, we've been doing a few different little studies looking at how brain injury is spoken about, and who's using it in different platforms. So we've done a study, study looking at Twitter, it was Twitter, then it's now called X, I suppose. But back then it was Twitter. And we kind of really just explored what was being said about brain injury. And actually, I found there were actually lots of people with brain injury using the platform to connect with others to share issues around their health, life after their injury, raising awareness, and also as a source of inspiration and hope. So both giving and receiving those messages. So that was really nice.

And then we've recently actually just completed some studies where we looked similarly, at YouTube and Instagram. And in both platforms, it was really clear that this is a space where people are sharing their stories of change. And because of the inherent functions of the platforms, they can share content that they make, or reshare, and a lot of it is quite visual. It really gives that person who's sharing the content, a lot more control over how they tell their stories. And I love seeing and hearing how people use social media to tell their stories. We're all so different. And even though there are similarities amongst the stories that people are telling about their brain injury, there's so much personalization and individuality. It's fantastic to see.

In some of the interviews that I've done, you know, one person told me about how they use Instagram to share their photos of the world so that they were a photographer before their injury. And since their injury, they see the world differently. And they're taking very different photos.

So I think everyone's using different platforms the way in which they want to, yeah, it's super interesting. Others have made using social media their vocation, so as a way of connecting with others who've had a brain injury and sharing, you know, tips and ideas to support recovery. And so that's kind of their job, and it's giving them that sense of purpose. Not just in using social media, but purpose in life and giving back and being able to feel like they have a sense of belonging and contribution. So, yeah, I find it super interesting. I love it.

Lyssa Rome

Well, and one of the reasons that I was really drawn to your work and wanted to talk with you on this podcast is that it seems like at its heart, what you've been studying and working on is promoting and enabling life participation for people with acquired brain injuries for whom social media is an important life activity—either was already before the injury or is now after the injury. And, to me, it's just, it's so meaningful for people and to sort of turn our attention toward social media in this way, I think is great. So it makes me wonder, to what extent are rehab professionals, speech language pathologists and others, addressing social media use with their clients or their patients?

Dr. Liss Brunner

This is a really hard answer to give. Because I'm speaking generally. And I know that, you know, we are very individual as clinicians as well. But when I used to talk about this, you know, I started more than a decade ago in this space, I would ask clinicians when I was talking at presentations, who's worked with clients on using social media, and I would maybe have one person put their hand up. Now, when I ask that question, the response is actually very different, and I would say, you know, the majority of people would indicate that they've worked on using social media in some way, shape, or form.

But I feel like we don't necessarily have lots of guidance on how to do that well. And so lots of clinicians have said to me that they feel kind of lost when it comes to using social media. Not everyone uses social media and some of us have our preferred platforms that we feel comfortable with and don't know anything about some of the other platforms, right? Some of us say using social media is just a bit of fun. And it's, you know, a bit of a distraction from real life. So we have lots of attitudes and beliefs around it.

And there's lots of challenges in addressing social media, because as I said, the platforms are constantly changing. And it's really hard to stay up-to-date. And so lots of people are really uncertain about all of those factors, and then they are, we've also got all of these medical and legal responsibilities, and we don't know where our boundaries are, in terms of navigating risks— whether we should be gatekeepers, or whether we should be just supporting people with information and education and coming in and supporting them if problems happen. Lots of people just basically want guidance, was what I heard. They want to know when to introduce the use of social media. They want to know when to let go of control of how people use it, and how to encourage really positive interactions. I feel like a lot of people have told me that because they're so uncertain, they tend to be mostly restrictive, rather than proactive. And so that restrictive practice occurs in lots of different ways.

So it could be encouraging, and helping families to keep devices at home and away from people who have a brain injury. It could be that they give people the devices, but they limit the internet connectivity, so they can't use them functionally. Or it could be that they manipulate the privacy settings. So it allows people just to lurk and watch other people's posts, but doesn't let them post and interact. And so, you know, there's often issues where family members are encouraged to monitor social media posts for appropriate content and things like that. And I find that's, you know, not ideal for anyone, really, no one wants to have to do that. And no one wants that to happen to them. And it can create lots more barriers to autonomy. I'm pretty sure if my parents were telling me what to do and what not to do in social media, I'd not have a great response. And I also feel if I tried to tell my kids what to do and what not to do, they'd probably go straight out and do what I told them not to do. Because as if I would not because I'm old. Right? And not cool. There’s probably another word for cool now that I don't know.

You know, I think it's, it's really personal. It's tricky to navigate. And as clinicians, we've got to be really clear about what our attitudes and beliefs are and how they influence what we perceive as appropriate or inappropriate and how we navigate those conversations. I love referring people to the Mark Ylvisaker and Tim Feenye paper that's about Dobermans and Poodles. Because it really does push people to think about how we interact and influence people in our rehabilitation practices. So I think as clinicians, we want to be proactive, but we're just not quite clear on how we should do it.

Lyssa Rome

In one of your papers, you wrote about how we as speech language pathologists can move from a sort of paternalistic attitude toward supporting the autonomy of our clients with acquired brain injury. And it's something I think about a lot, not necessarily just in this context of social media, but in all other kinds of ways. And I'm wondering if you could say a little bit more about that, and about how SLPs and other rehab professionals should be thinking about including social media training and the work we do?

Dr. Liss Brunner

Yeah, it's really tricky. Because, you know, we don't want to be restrictive. We don't want to be gatekeepers, we want to be supportive. And I feel like sometimes when we don't have guidance, from our evidence in the research or practical resources, we can flounder a little bit, particularly when we know there are so many risks associated with something like using social media. I think we can probably all acknowledge that restriction isn't the answer, because it doesn't set people up for real life. It doesn't give them opportunities to learn from mistakes, which is what we would do a lot of the time in real life.

I think one of the things that we can really do is harness the knowledge and skills of the person themselves, to help us as clinicians to know more about how they want to use social media, which platforms they're interested in, particularly if we've got no clue about how to use it ourselves. And so this could be a way to really educate ourselves, and kind of have more of a collaborative approach with that person. So you can set goals together, you can identify what's going to look like successful social media is to that person. How can we use what they did before their brain injury to guide us in terms of, is this something you want to get back to? Or do you want to do something different now? Those sorts of things. We can look for ways to provide them opportunities for participation, and give them some instructions on what might work really well. Let them go and try that. Give them education and really constructive feedback, so that they're working towards those positive interactions and trying to mitigate those risks in that really proactive way. Obviously, I think we need some policy around this, and guidance so that we can actively support people.

But I think probably one of the first things that we need to do is address social media goals in rehabilitation. And these can be informed by other successful brain injury rehabilitation approaches, you know, so we've got lots of information on functional rehabilitation, we know that more meaningful rehab is motivating and more likely to have better outcomes. And we could adopt strategies that have been used in rehab that support other activities that we feel are higher risk. So always I think of return to driving. You know, we support people, occupational therapists, support people to return to drive and I think that's inherently really dangerous. But we do it because we see it as a really important goal for people to return to after injury. I kind of feel that social media is kind of in a similar vein, we know there's risks, let's put education and practice in place to support them to do well.

Lyssa Rome

Speaking of education and practice, you've created a training program for people with acquired brain injuries on how they can start to successfully use social media. So can you describe that and tell us a little bit about that program?

Dr. Liss Brunner

Yeah, I mean, I worked as a clinician for many, many years before I got suckered into research and fell in love with it. And so I always want to think about the practical implications of the research that I'm doing, I want to provide resources and guidance. And so I was very lucky to be able to work with the team at Sydney Uni, and the University of Technology in Sydney, and brain Injury Australia. We were able to source some funding through a grant, which was fabulous. And we had this larger project called the Social Brain Toolkit. And part of that was developing social-ABI-lity. And so it meant that we were able to work with people who've had a brain injury, some family members, some clinicians, and other researchers to design this social-ABI-lity program. And essentially, it's a free online training program on how to use social media after brain injury.

Very simply, it's designed so that people with a brain injury can do it themselves, or they can do it with family or a friend or a clinician to support them. It takes about two to three hours to work through everything. And there's four modules, and so the modules are: What is social media; staying safe in social media; how do I use social media; and who can I connect with in social media. And we've really used metacognitive principles to support people to make a plan for using social media in a way that really suits them. And so we wanted to give them ideas on staying safe. When using social media and cyber safety, even those, there's one module on staying safe. Cyber safety is actually threaded through all four modules, because it was such a priority for everyone that we spoke to. And it just provides people with opportunities to learn about using social media, and really promoting the idea of finding social media buddies and building up a support network in social media. So there's written info, there's videos, there's questions to work through, there's a printable worksheet, so people can write down and keep the messages of the four modules. And things like that.

We've run a pilot study, so that people could test out the prototype. And they found it was quite valuable. They thought it was really engaging and functional. They also told us what they didn't think was working. So we tweaked it, and hopefully made it better. And then we actually piloted that again, because we knew that just the training by itself was probably not going to achieve the best outcomes possible. We wanted to know whether group intervention would help. So we kind of got people to do the social-ABI-lity program, and also a peer practice group. So we set up the social-ABI-lity plus a social media practice group kind of thing. We set up some Facebook groups, because Facebook is one of the social media platforms that lets you set up a group and have private conversations. But you also don't necessarily have to be friends with everyone. So it meant people could keep their distance if they wanted to.

In this study, we ran two groups for 12 weeks. And we basically just gave them stuff to talk about and connect with in this Facebook group. We also added in occasional meetups on Zoom so that people could meet each other face-to-face, even though it was online. So, you know, at the same time, they could have conversations and get to know each other in that way and see each other's faces. And the two groups found that this was really beneficial. So they had more confidence in using social media and they were just thinking about using it in a very different way.

The other thing that we thought about though was we know that there's just this connection between people who've actually lived the path, rather than, you know, being directed by someone like me who hasn't raised this difference in connection. And so we wanted to know whether having a peer moderated group would actually change things. And so we've recently just run a peer-moderated group. And so we kind of sweet-talked two of our previous participants who were quite active in the groups and said, “Do you want to be part of our research team? Would you like to moderate a group? And we'll see what happens.” And so we negotiated with these two awesome people. And they ran the group for eight weeks. So we shortened it a little bit just to make it more feasible and test it out. And before we started the group, we met with our two peer moderators, and said, “What do you feel comfortable doing? What don't you feel comfortable doing?” And we negotiated our roles before we even started, and even though they weren't significant changes in confidence, or any of the quantitative data that we collected in terms of quality of life and things like that, the conversations that people had, were just, I'm going to use one of the moderators words “profound.” They were so different, they were more poignant, and deeper, the conversations that they had in these peer-moderated group, and the reflections that all of the participants had really showed that they connected on a really different level, which was quite lovely. Again, they found it was all feasible and engaging. But there was something about that added element of the peer moderators that made it extra awesome for the people involved, as well as for the peer moderators themselves, they just found that they had improved confidence and improved sense of self for being involved in it. So it was that sense of giving back that really made that group scene, which was really lovely.

Lyssa Rome

I think that that's so exciting. And it makes me wonder what else you're working on? And what's coming next.

Dr. Liss Brunner

Yeah, I mean, there's so many ideas, and it's just a matter of actually making them happen. Lyssa, at the moment, were actually designing a social media communication assessment tool that we hope will really help not just clinicians, but also people with brain injury, to start this process of figuring out their purpose in using social media and what their goals might be. And so we're designing it with people with brain injury and clinicians around the world. So that hopefully, it will be really relevant to everyone to just start those conversations. So we hope to have the first version of this available to share freely, hopefully, by the end of the year—next year, definitely. But I'm really excited to see how that pans out. That's the first next step.

Lyssa Rome

Yeah. I think that that is really exciting. And it it, it reminds me of something else that you've written about, which is how SLPs can almost assess their own social media use or think about it, and step back and think about it in order to better help their clients in their social media goals. And I'm wondering if you could explain a little bit about that for our listeners.

Dr. Liss Brunner

This is some work that I actually really loved doing. I think one of the things that can really support how we're able to assist others in using social media is to be really aware of our own use of social media. And I think in this particular paper that you're referring to, it's like we use the metaphor of a garden. And we kind of encouraged people to think about their own use and purpose of using social media. And we used this very arty based approach to thinking about our professional social media identity. And so we kind of describe this process of visualizing your own social media garden. And so it's a metaphor you can use to think about your purpose and build a strategy around how you're going to achieve that. And I think it can be used to get kind of like this real understanding of what social media really means to you, and identify aspects of your own professional identity that are important and could be enriched through using social media. So I think, you know, if you're interested in not just how you use social media professionally, but also how you can help people clinically, in this paper, we really tried to provide another resource to outline strategies for using different techniques to build up your professional and clinical practice.

Lyssa Rome

For me, as a clinician, I think one of the takeaways from this conversation and from reading your articles, which we will link to in the show notes, is this idea that we should be reflecting on our own social media use, and our own assumptions about social media use and its risks and its benefits. What other takeaways should listeners be thinking about—things that they can implement in their own clinical practice?

Dr. Liss Brunner

I couldn't agree more, Lyssa. I think reflecting on your own social media use is really powerful. I think it's a really good place to start. And I think then you can just start by having the conversation with people asking about why they use social media. Which platforms are you interested in? What do you want to get out of using social media? Who do you want to connect with? Just having those conversations, I think will give you very rich data to start making some decisions, having ideas around what goals could be targeted. I think, as you said, we'll put the link to some of my papers. But certainly the facilitators that I've mentioned in the AJSLP paper, can be kind of those five factors that can really guide you in thinking about the different aspects to consider around social media use. So you can kind of use that as a bit of a guide, until we're able to create and trial new resources to support that further.

I think there's probably three key resources that I typically recommend that people check out if they want to support people to use social media. I think the obvious one that I'll point out is the social-ABI-ity program. And we'll pop the link in there. I think the other thing that I'd like to mention is another free online training program called Cyberability. And this has actually been designed by some colleagues here in Australia at Monash University, led by Dr. Kate Gould. But it's been built in collaboration, again, with people with brain injury, but who have also been scammed online. So they've got that lived experience. And they contribute their strategies and tips and what they've learned from going through that experience in this training. So I'll make sure that we get the Cyberability training link for you as well. The other resource that I find really useful here in Australia, is that we've got the Australian eSafety Commissioner website. And it's actually been supported by our government to provide lots of advice and resources on staying safe online. And I think, for kids in particular, I can be really handy. So I don't particularly work with kids. But I find that some of the resources there are really good if you do work with children. And there's actually an eSafety guide. And so it actually lists all of the different social media platforms and talks about how to protect your information and report harmful content on those particular platforms. So I think that's a really handy tool for people to know about as well.

Lyssa Rome

Those seem very useful. Thank you for bringing those to us. And again, we'll link to those resources. I am so glad to have had this chance to talk with you and I'm really looking forward to all of the exciting things that you're working on now. Dr. Liss Brunner, thanks so much for being a guest on this podcast.

Dr. Liss Brunner

Thank you so much for having me, Lyssa. It's been wonderful. I could talk about this stuff forever and a day. So I'm really pleased that we've had this opportunity. Thank you.

Lyssa Rome

And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.

Additional Resources

Contact Liss: melissa.brunner@sydney.edu.au

eSafety Commissioner: www.esafety.gov.au/

eSafety Guide to Staying Safe Online: www.esafety.gov.au/kids/I-want-hel…ing-safe-online

Cyberability - free training on how to stay scam safe after brain injury: www.cyberability.org.au/

social-ABI-lity - free training on how to use social media after brain injury: abi-communication-lab.sydney.edu.au/courses…I-lity/

Brunner, M., Hemsley, B., Togher, L., Dann, S., & Palmer, S. (2021). Social media and people with traumatic brain injury: a metasynthesis of research informing a framework for rehabilitation clinical practice, policy, and training. American journal of speech-language pathology, 30(1), 19-33. https://doi.org/10.1044/2020_AJSLP-20-00211 *Email Liss for a copy*

Brunner M, Rietdijk R, Summers K, Southwell K, Avramovic P, Power E, Rushworth N, Togher L (2024) ‘It gives you encouragement because you're not alone’: A pilot study of a multi-component social media skills intervention for people with acquired brain injury. (Invited paper for a Special Issue on SLT/P clinical management of traumatic brain injury across the lifespan), 59, 543–558. https://doi.org/10.1111/1460-6984.12806

Brunner M, Rietdijk R, Avramovic P, Power E, Miao M, Rushworth N, MacLean L, Brookes AM, Togher L (2023). Developing social-ABI-lity: an online course to support safe use of social media for connection after acquired brain injury. AJSLP (Invited paper for a Special Issue of Select Papers from the International Cognitive-Communication Disorders Conference), 32(2S), 924-940. https://doi.org/10.1044/2022_AJSLP-22-00099

Brunner M, Rietdijk R, Togher L (2022). Training resources targeting social media skills: A scoping review to inform rehabilitation for people who have an acquired brain injury. JMIR, 24(4), e35595. https://www.jmir.org/2022/4/e35595/

Brunner M, Bryant L, Turnbull H, Hemsley B (2022). Developing and sustaining a social media ecosystem in speech-language pathology: Using innovative qualitative methods to visualise and cultivate a social media garden. IJSLP (Special Issue on New perspectives, insights, and practices: Qualitative research innovations in Speech-Language Pathology), 24 (5), 558-569. https://doi.org/10.1080/17549507.2022.2069860 *Email Liss for a copy*

Ylvisaker, M., & Feeney, T. (2000). Reflections on Dobermanns, poodles, and social rehabilitation for difficult-to-serve individuals with traumatic brain injury. Aphasiology, 14(4), 407–431. https://doi.org/10.1080/026870300401432

  continue reading

100 jaksoa

Alla avsnitt

×
 
Loading …

Tervetuloa Player FM:n!

Player FM skannaa verkkoa löytääkseen korkealaatuisia podcasteja, joista voit nauttia juuri nyt. Se on paras podcast-sovellus ja toimii Androidilla, iPhonela, ja verkossa. Rekisteröidy sykronoidaksesi tilaukset laitteiden välillä.

 

Pikakäyttöopas