‘It’s not an easy conversation to have with a kid who thinks they’re invincible’

When did you first get interested in the role of digital and social media in supporting bereaved students?
I have been following the role that social media has had in dealing with illness, death, grief, and tragedy since social media became popular… I first wrote about how teenagers are using social media to cope with loss in 2008/2009. However, my interest in monitoring this more closely intensified the day after the '518' case, a December 2012 car crash involving people from two neighbouring communities. 

That Sunday afternoon, I asked my teenage daughter 'What's up in cyberspace?' when I saw her fingers flying on her phone. She responded that she was tweeting for Missy to call Bailey and for Tim to call Matt, and I realised that these were the names of the two high school students who had survived the crash. At that point, I knew that something unique was happening with social media to motivate a teenager who did not personally know the people who were involved in the crash to provide social support to them during a time of grief. Following what was happening led to interviewing the families and survivors, and at their request, we developed the survey that gathered the data used in the '518' case.

Sometimes you just get hit over the head with something that's happening right in front of your eyes, and realise that you need to pay closer attention. Even though I'd been looking at it from an academic point of view, all of a sudden the parent in me saw it happening and thought: 'I need to pay closer attention.'

Deaths among young people tend to occur suddenly and unexpectedly. Does this bring particular opportunities and risks in terms of social media?
For teenagers today, social media is just a part of their DNA, they don't think twice about using it, it's always there. That brings them opportunities to talk to each other about what's happening in ways that people might not have done if they'd had to do it face to face. We need to recognise and acknowledge that social media isn't going to go away. As soon as we learn from the kids how it's helpful to them, we can hopefully facilitate ways for that to be even more helpful. It's also an opportunity for us to learn about how they cope and react to sudden and unexpected death.

The tricky part with the risks is that unless someone takes time to talk to kids about the pros and cons of how it can be used, and making smart decisions about how quickly you post things publicly, especially if it's sudden and unexpected, they may not realise that it isn't appropriate for a close relative or a dear friend of someone to find out on Facebook or Twitter that someone has died. Teens may need help managing that impulsiveness. If they haven't been educated about maybe why it isn't a good idea to jump right on to social media, how would they know that it could be disadvantageous for someone or potentially harmful for someone to find out that way?

The other risk is that the information isn't necessarily accurate when it goes out on social media. We have to talk to the teenagers and help them understand that it's important to verify information before you share it, and to think about how you go about finding accurate information. They also need to consider what's the appropriate face-to-face strategy to use before you hop on to social media. This will help them to be better educated and aware of the pros and cons of social media use during times of tragedy.

Does the evidence suggest that teens have a preference for sharing bad news through 'thanatechnology'?
I have to be really cautious with this answer because there is not a whole lot of data, so part of the answer depends on how you're defining evidence. I'm not aware of additional studies that have been done that have asked specifically 'how do you share bad news?' and 'what's your preferred way for doing this?'  I only have access to the information that was shared with me in the survey that's described in the book chapter.

Based on that limited evidence, some teenagers like what technology provides to them. Some like being able to get information quickly and being able to have their reaction or response to bad news in private. Other people expressed a strong preference for not using technology: they kind of wanted somebody to be in the room with them, sitting there and telling them face to face, and being able to support each other through the impact of that bad news. Other people reported using a combination.   

I think what probably would be safe to say is that parents should have a conversation with their child when there isn't a crisis going on, and just ask them what their thoughts are about this. I'm not sure how often people have these types of conversations before there's an emergency. Often people have to figure it out as it's happening.

It's amazing how teens use technology as a resource for fact finding, but sometimes when they get the information they might not think carefully enough before they share it with the rest of the world. In the '518', there was a lot of inaccurate information that was shared either on social media or in text messages, because of the impulsivity that I noted before. I guess they didn't realise they needed to make sure the information was correct before it was shared publicly.

Are there lessons for how students can work with mental health professionals during times of grief?
I think students and mental health professionals should become partners in learning about how social media is being used to cope with grief. Mental health professionals have a disadvantage in that most of us are not very familiar and up to date with what is happening online. I think the students can teach us about how they're using technology and whether or not it's helpful. Mental health professionals have a responsibility to educate the students about the pros and cons of social media use, how it can serve as a resource for them, but also some of the things that teens need to be mindful of; it's not always great and there are some disadvantages of using it.

Students can be our 'eyes and ears'. They can certainly tell us what's new, help us become familiar with what is out there and how the different apps are being used. On the other hand, we have to be the teachers to help them understand the benefits and the risks of using these resources.

Do you think young people should be writing a 'Digital will', setting out who might close down their accounts or manage a memorial page, whether parents should be able to gain access to their phone, etc?
This is a really interesting question. Of course I'm going to say, well yes, I think people should talk about this. I've always said that as soon as a young person is old enough to use social media and to have a phone, that parents should sit down and have a conversation about, 'alright, this means new responsibilities, and this means that we have to ask you some tough questions'.

In theory, I think this is important. A 12- or 13-year-old might say 'why do we need to talk about this', and that's when the rude reality becomes 'well, you know, the highest cause of death among people your age is accidents, and you don't necessarily know those are going to happen'. It's not an easy conversation to have with a kid who thinks they're invincible. However, it's also hard to predict at what point parents going to be comfortable having these conversations with their kids. We need to think about how to help parents gain the skills, knowledge, and the confidence and that they need to be able to have those conversations.

DeadSocial is an organisation in the UK that has created social media wills, and they have all kinds of great information on their website that people can use to document what they want. The tricky part is whether or not people know about those resources, as well as figuring ways that mental health professionals and teachers / staff at the schools can create opportunities for parents to come learn about the different mechanisms that social media sites and other technology resources have for setting legacy contacts, or sharing information.

The availability of social media and technology creates a new urgency to have conversations that most people never want to have.

How can digital and social media spark positive reactions to the death of a young person?
My students right now are finalising a digital death survey that they're going to send out, and one of the things that I talked about with them is, 'alright, what are the social media resources and apps that people your age are using?' They generated this list, and people use Instagram, and Snapchat, and Storify, and YouTube; sharing videos and pictures and memories happens on things other than Facebook and Twitter.

You have to think about what purposes all these things serve – it's to commemorate someone's memory, it's to give people a place to share their grief and to share their emotions and to share their laughter and their positive memories, because I think it's about balance, and kids have a really nice way of achieving this.

The other is to honour and recognise that ongoing connection that technology provides a way for somebody to stay in touch with someone who's died, to have an ongoing conversation. Whether somebody believes that the person can actually see or hear it, is a whole other conversation based on what you think happens after someone dies, but it provides an outlet, it provides a mechanism for someone to take that grief and that emotion and get it outside of themselves. Whether that's being shared in a very private way with only the person who died, or whether that's shared in a very public way, depends on whether you're a public or a private griever. 

This addresses the need to create a continuing bond, because we know now that grief doesn't disappear. It doesn't just go away; you don't get over things, you find different ways to channel that emotion and that grief. For some people, using technology and social media to communicate creates an ongoing connection with someone who has died.

And for some, their response goes beyond event this?
Yes, many people also have a need to do something positive, and that's where digital survivor advocacy comes into play. Someone who perceives part of the death or the loss as preventable may want to do something, whether that's educating people, raising awareness about an issue, changing policy, changing people's behaviour in a way that will prevent someone else from experiencing the same loss. That's a very powerful way to give a person something to do instead of feeling helpless. Using social media for digital survivor advocacy technology is a wonderful way for people to participate in these kinds of efforts.

When you think about the memorial pages that appear after highly publicised tragedies, whether it was an attack on the subway in your country, or in a newspaper office in Paris, or a church in Texas, the whole world now has access to these kinds of sites. Many people are sending condolences for people they never knew. Now you see filters that you can put on your profile picture on Facebook to express your support for people impacted by a tragedy. You see those waves happening after, and I hate to say it, the 'tragedy of the week'. They come so fast, and people respond very quickly to show support; then they kind of fade away until the next one happens.

When a tragedy occurs, you feel like you have no control – 'this could happen to me, this could have happened in my neighbourhood', and I think by doing something, it might help a person to feel more in control or to feel less helpless by reaching out and showing support. And, if this were happening to me, I'd want someone to know that there are people out there who care, so maybe they don't feel so alone.

It's interesting to think about how total strangers are now providing support to people who are grieving, and to think about what motivates someone to do that. Usually, the "stranger" posting a message has had a similar, highly personal loss; they can relate to what the other person is going through. This 'experiential empathy' provides them with the ability to relate to what the newly bereaved person is going through. The 'stranger' knows what to say that might help, so they do. I think teens are doing that too.

You're a psychologist by background, now a professor of social work. What would you like to see more of, from psychologists or in inter-disciplinary terms, in this area?
I think there's always a benefit to interdisciplinary collaboration, because every discipline has their area of expertise, their skillset, and their strategies for intervening. By sharing our strategies with others, I think we can strengthen what each of us is able to do.

It isn't just helping professionals that should get involved. I'm talking with one of my colleagues in the computer science department to see if his students can help me figure out a way to monitor and track what's happening in cyberspace related to death, dying, grief, and loss, because I don't have the skillset to do that. I have the content expertise and the knowledge, but they have the mechanical expertise.

I would love to see this collaboration become even more diverse with more involvement from the human computer interactions field, the technology experts, and the communications and media studies scholars. I would love to see us all work together to figure out how we can do a better job.

And we need to involve educators and professionals in the schools. In Taiwan, life educators teach kids from kindergarten through high school about different aspects of life that help them to have a healthy, happy life and to cope successfully with challenges, including death and grief. In the United States we don't do a whole lot of that. I've been asking my students in my death and dying class here at Siena, 'how many of you had death education content in high school?' Sometimes they look at me like 'what, why would they do that'?

I think about how we could weave this in to health education – we could teach kids in high school how to handle a tragedy or a crisis, and maybe that's when you talk about preferences for death notification and about the wise use of social media. If something happens to one of your classmates, if there's an accident or if somebody becomes ill or sick, how do you know whether it's okay to share that information publicly? What are the things you need to do and talk about; have you talked to your parents about what you want to happen to your social media if something happens to you?

Maybe it needs to start with the teenagers. Maybe they're the ones who are more comfortable opening up conversations.

So you've found some who are less comfortable?
I know I had a conversation with school administrators after the car crash here, just to say, 'are you comfortable sending out a link to this survey to the parents of students in your school'? They had to say 'no' because they were afraid that some of the parents would be upset. The parents of the kids in the crash were all on board and helped to design the questions and to share the link to the survey, but the administrators at the school have so many different angles that they have to consider, it's not always easy to come up with the solution that's comfortable for everybody. It's a fascinating problem to solve: what is the best way to get people on board to even have a conversation about whether or not it's a good idea?

Where do you take this area next?
If people read this and they have thoughts or ideas, please reach out to me. If new things are happening that I'm not aware of, people need to teach me about things that I don't know. This is such a new area and we have so much to learn; I can't even imagine that I know all the right questions to ask at this point. We all need to learn from each other and with each other. 

-        Carla Sofka has a chapter, 'The role of digital and social media in supporting bereaved students', in a new book Supporting Bereaved Students at School, edited by Jacqueline A. Brown and Shane R. Jimerson and published by Oxford University Press. Keep an eye on Twitter @psychmag for your chance to win a copy.