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

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