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TRANSCRIPT

VOICEOVER: This podcast is from the Summer Foundation breakfast club lecture, recorded on August 19 2015. The Speaker is Jacinta Douglas, Summer Foundation Research Chair and Professor of Acquired Brain Injury, La Trobe University. The topic is “Developing and maintaining a sense of self and social connection several years after severe brain injury.”

INTRODUCER: It’s my very great pleasure to be introducing our speaker for today’s third Summer Foundation Breakfast series.

But before we actually get started, I’d like to take a moment to acknowledge the traditional owners of the land, as is the tradition of the Summer Foundation.

For those of you who are not familiar with this layout, if you need to go to the toilet, it’s just out, down that way to the right (points) and Jacinta will be finishing up around nine-thirty, and we’ll aim to have a very short break somewhere in there to have a bit of a stretch, so if you could hang on until then, that would be great.

I don’t think Jacinta really needs much introduction. She’s a very well-known person to all of us.

She is a professor of acquired-brain injury at both La Trobe University and the Summer Foundation and she’s got so much research behind her in so many broad areas, but I think the thing that really comes through in all of her research is the interest in the families and the people and the impact of the brain injury on that whole system.

The topic that Jacinta’s going to be talking about today is something that’s been really growing and building a huge amount of research that’s really looking at the connection between identity and social activity, so today’s talk is actually called Developing and Maintaining a Sense of Self and Social Connection, several years after brain injury and Jacinta is going to entertain us.

She’s very happy for people to ask questions along the way, and there should be some time at the end to talk as well.

Thank you, Jacinta.

(Applause):

JACINTA DOUGLAS :Thank you Marg. There will definitely be time to talk at the conclusion.

I hope I don’t take up a whole hour-and-a-half, but if you ask questions along the way, we might, and feel free to do that because there’s nothing worse than sitting there, thinking, that’s a load of codswallop, I think I’d better correct this, or when you have a great idea, I’m really happy for you to share that then.

If we get a little bit too tangential, I might say, let’s wait until we get towards the end.

It’s lovely to see you all here this morning, I think at such an early start. I’m really impressed.

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I’m impressed with myself, as well as with you, and that early in the morning, the traffic is a lot better, so I might’ve learnt something really important.

As Marg said, what we’re going to talk about this morning, what I want to share with you is some wonderful wisdom that I happened to gain from talking to a great group of people with very severe brain injury, over a fairly long period of time, about their sense of self. What I was really keen to get an idea about through this piece of research, was how do people with very severe brain injuries see themselves, quite a few years, many years, post-injury, in fact?

There’s a lot in the literature that talks about this loss of sense of self and reconstruction of self, so what I was acutely aware of was that I’d worked with lots of people who had a very strong sense of self, who actually had gotten to a point in their life where they were able to conceptualise self in a very clear way, and as I’ll mention when we talk about this, who conceptualised themselves not by their brain injury, but almost in spite of their brain injury. So as I say, I felt really privileged to actually get some insight in to that wisdom and that’s what we’re going to talk about this morning.

More importantly I hope, is we’re going to talk about taking the learnings from this piece of research, and applying it to working with people collaboratively, with people who have had brain injury, and using what came out of their internal sense of self, to guide our therapy.

So there are two issues, let’s understand what’s happening in their experiences, and two, let’s see if we can apply that to what we do with those people, OK?

I’ve probably said what’s on about three slides now, so the focus of the presentation is the client’s perspective on self, and what’s important here is… what we talk about this morning is derived from the people themselves. It’s derived from twenty people with very severe brain injury, so it’s their model.

It’s not my model, it’s a model that in fact emerged from their wonderful interview transcripts.

What was also very clear was that this sense of self was supported by factors that facilitated a connection with society and that was really important. That sense of being connected, having social connections came out of the very strong, underlying supporting factor, and these factors enabled, as I said, that unique social environment that that individual lived in.

All of those social environments were different in many ways, just as ours are, and that it was that social environment that when you look back over the stories these people told, had helped this dynamic construction of self over time, and finally, that social environment supported their wellbeing, so that’s what we’re going to look at, and then as I said, we’re actually going to look at a framework, using the model that arose from the research to guide our therapy, and we’re going to spend some time talking about Emily, who’s a young woman, who subsequently, I’ve worked with, and we’ve applied the same model, to see if in fact, it works out with her.

There are others, but Emily’s, I think, a good one to start with.

The literature tells us that self-concept is a multidimensional internal representation of the self.

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The important thing there is that we carry around this sense of ourselves with us wherever we go, and it’s sometimes not congruent with how other people see us.

You can probably think about times when you felt somebody has responded to you in a way that just doesn’t fit how you see yourself, and it’s quite disconcerting.

That’s important to actually remember, because if you respond to someone you’re working with, in a way that’s not congruent with their sense of self, you’re likely to have a bit of a struggle in building up a good therapeutic relationship, so understanding how they see themselves is important.

It is a dynamic knowledge structure, it’s actually stored, we think, in semantic memory, so it’s actually a memory component of how we see ourselves, it shapes our behaviour. I act in a way that’s congruent with the way I see myself most of the time, fatigue can get in the way, substance consumption can get in the way, so there are lots of things.

Sometimes emotion can get in the way, when you’re angry, you may actually act in a way that is not consistent with your sense of self.

It also affects the way we process information, particularly information about ourselves. It influences our choice of goals, our goals really simply are an extension of the way we see ourselves.

If you have a really poor conceptualisation of self, or if you have a sense of having lost your identity, it’s damned hard to develop goals and that often is one of the reasons why people we work with have difficulties in developing goals with us, because they haven’t actually crystallised again that sense of self.

It affects, as I said, how we relate to others.

I love this, this concept that Barbara Shadden introduced in 2008 when she said, our sense of self is a unique product of our own specific walk through life, so it reflects not just the who we are, but the where we’ve been, the what we’ve experienced, the who we’ve loved, the who we haven’t loved so much, the who we’ve fallen out of love with, it reflects that whole journey that you move through life with.

That makes it a very, very powerful psychological construct. So the aims of the research, as I said, that I’m going to talk about was really to understand from the person’s perspective how they saw themselves and then to actually see what the ways were in which they developed and maintained a sense of social connection.

One of the things that haunts me to this day is the fact that I’ve been working with people with brain injury for many, many years, that doesn’t haunt me. That’s a good part of my life, but what haunts me is one of the things that was really clear in my doctoral research was that social isolation was an incredible problem for people with severe brain injury, not only for them, but often for their families, and I go to conferences now and I hear, more often than I would like to admit, the same outcomes.

Social isolation is probably the most frequent outcome for people who’ve experienced severe brain injury.

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For some people who’ve experienced severe brain injury, the only people they interact with regularly are professionals. They’re pretty good, there are no problems with that, the people who are their carers, their attendant carers and disability support workers, and maybe a little bit of casual interaction with people in the community.

But more than 55% of people, when you ask them, five years, ten years… Robyn Tate wonderfully asked a consecutive series of people she’d worked with back in the 80’s, twenty-three years later what their life was like, and 63% of them said their biggest problem was not having social relationships.

That seems really wrong to me, and it seems like something we need to be changing, and perhaps this is one of those ways of doing that, if we understand the factors that help people stay connected. I could talk for ages about that, but we’ll move on.

So as I said, there were sixteen men and four women, not surprisingly, we have more males because brain injury we know doesn’t occur randomly, it’s much more likely to occur in young males, so we have four times as many males in this study as we have women.

You can see that they all had very severe injuries. For twelve of them, we had Glasgow Coma Scale scores, and they ranged from three to five, and for the other eight, we had post-traumatic amnesia duration, and that ranged from twenty-eight to 150 days, so we’re in that very severe end of the range, OK? Not as severe as some people, but as I say, all these people are living in the community, with varying levels of support, I have to say.

Their average age was thirty-five, with a range of twenty-one to fifty-four, so in that young adulthood range, fifty-four seems like young adulthood from where I’m standing.

Time post-injury was on average ten years, but with a range of five to twenty years, five was the minimum. What I was really interested in understanding was that long-term sense of self.

As I said, they were all living in the community, six were living alone with support, two were living with their spouses, nine were living with family, with additional support as well, and three were living in shared supported accommodation, OK? So then you’re getting a sense of the people in relationship to those who you work with, OK?

None had been able to sustain competitive work, even in a reduced environment or with reduced demands.

One actually was working in a supported disability employment environment for about twenty hours a week, three worked in a volunteer capacity, and that was really important for them, two were enrolled in part-time vocational training programs, thirteen attended group-based leisure activities in various, sometimes in disability support organisations, sometimes in regular community activities, and one person really had a significant sort of social-phobic reaction to being around people, needed one-to-one support to interact, either in very small group activities in the community, or one-to-one with attendant carers.

OK, so this is a qualitative study, which means that you have really, the joy in many ways of sitting down and talking with people in a very open, in-depth interview, and the approach that I take to qualitative research is what’s called a constructivist grounded theory approach, which means you go in without too many preconceived ideas, you actually interview people in a way that doesn’t direct them to say what you want them to say.

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A lot of research that we’ve done in the past has been filling in forms or questionnaires or scales, which means that people can only respond in the way you think has, if you like, driven the questionnaire, or the development of the scale, so if somebody hasn’t thought of a factor that might be really important in that person’s life, it’s not on the questionnaire for them to actually say, yes, I do this all the time.

So qualitative research is a really nice way, and particularly constructive as grounded theory, it’s a really nice way of getting that in-depth insight in to the real experience of people.

It’s very time-consuming. Interviews ranged from ninety minutes to four hours, I can say, over many cups of tea, coffee and chocky biscuits, sometimes not chocky biscuits, but plain biscuits, all good, so it’s one of those situations where you actually get to be with the person, and you explore things together. You say very little.

Now given the severity you have seen of this group of participants, communication was a challenge for a lot of them, so in writing this up, it’s been described in such a way that we used some scaffolding, so it was a tough challenge from an interview perspective, but can I say, worth every second of it.

You audiotape and transcribe the interviews and they become your data. You code it line by line, comment by comment, and you do that in an iterative way, and you compare and contrast people’s experiences.

Those of you who are doing qualitative research in research you might be doing know the joys and sometimes the not joys, of this methodology. It challenges your brain, you often feel that it’s too big. So three themes emerged from this data, and they’re not rocket science.

The first two, who I am and how I feel about myself actually described how these people conceptualised themselves. We’ll break it down, but they talked about themselves in the sense of ‘this is who I am’ and they also have an evaluative component there and ‘this is how I feel about myself’.

Think about yourselves and probably that’s exactly how you think about yourself. These are the things that I know about myself and some of them I feel good about, some of them I don’t, OK, and the other theme that emerged was staying connected, so we’re going to dig in to both of these, the conceptualising self and the support staying connected themes.

Conceptualising self, as I said, had two components. There’s knowledge component, ‘who I am’, and that was the first thing that continuously emerged across the data, and the second one was the evaluative components, ‘how I feel about myself’, OK?

Straightforward, two very simple ways to think about it.

I have to say what amazed me that in fact, there are a lot of models of identity and self-concept out there, but it was interesting that these themes have come through almost all of those models. So at some level, perhaps we just needed to ask people rather than do some of the other things we’ve been doing since Aristotle was actually interested in identity.

Within knowledge components, there were some very clear indicators of attributes, so the first part of our knowledge components are the attributes we see in ourselves, and in the interviews, they were clearly identifiable because they were describing statements.

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They describe from the person’s perspective who they were, what their attributes were, so an example here is, I fit in really easily with others.

Other attributes were I’m impatient, I’m kind, I’m handsome, I’m cheeky, I’ve got a great sense of humour, so they were really straightforward personal attributes.

Nobody described themselves by brain injury. Remember, we’re long-term?

Nobody started the conversation when I said, tell me about yourself.

Nobody said, well, I’ve had a brain injury, or I am a brain injury, or I am brain-injured.

They talked about who they were. They talked about their actual personal characteristics, and that was, for me, I went in, thinking that brain injury was going to be front and foremost, but by this point in these people’s journey though life, they were who they were, and that was really important.

The second thing that was really evident in this knowledge component of self were goals, five to twenty years post, with an average of ten years, people had striving statements riddled throughout their interview transcripts, what I want to do, and those striving statements, so we had these descriptions and we had these striving statements, those striving statements tended to be categorised in to four categories, a little bit loosely, there was a physical category, and a material category, an example of a physical category was, even this many years post, things like I want to increase movement in my arm.

This is where you started to get a flavour of the brain injury. This is where, if you like, this having some limitations on functioning became quite clear, so for some people, twenty years post, there was still a desire to change their physical functioning.

Of course there was. All of us go through life with, I wish I was fitter. I wish I was less heavy, whatever it happens to be, we have physical goals.

Not surprisingly, every one of these people had physical goals.

There were also social relational goals and activity goals. I think if we actually did this with you, if you fill in this little model when we finish it for yourself in your own time, you’ll actually get a nice guidepost for you, for where you’re going and what you’d like to do. So an example of an activity quote out of the data was, I want to be able to go back to work.

How many times have we all heard that? This doing some meaningful occupation. I’m really well-educated by OT’s now, the importance of that meaningful occupation in your life, and I’ll give you an example of the other categories in a moment.

So this was, if you like, the who I am component, really simple, describing statements and striving statements. It actually, if you like, simmered down to being these two important elements, quite complex within them and then within the data emerged this evaluative component of self and the first component here was a description of achieving, of achievements.

They were the achieving statements and they were almost, if you like, the stocktaking of the outcomes of goals. If you think about that, today’s goals become tomorrow’s outcomes, or today’s outcomes reflect yesterday’s goals. So there’s a relationship here, that you can

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actually see the journey to the point by looking at the outcomes and by listening for achieving statements, and those achieving statements did reflect the same categories. For example, in the material category, one young man was particularly happy to say, I live in my own unit. I own this unit. This is mine. This is my home and it’s mine, and that was an incredibly important theme that came through for pretty much all of the participants. The participants who had managed to either continue to live in their own home, to actually find a home that they really considered their own.

Home is particularly important. We also saw those social relational and activity achievements or outcomes being described, and here, we have somebody saying, I’ve made a lot of friends where I volunteer.

This relationship between social relationships and activity was quite strong in the data, so we actually encounter opportunities to form social relationships if we’re active.

If you’re not active in the community, then the social relationships often become really vulnerable and problematic, so there are two reasons, if you like, for having meaningful occupation. It builds a sense of self, it gives you goals, but it also creates that social connection with other people in your social environment, so pretty simple.

Then when you have a look at this evaluative stuff, it was truly the existence of evaluative statements. Statements like, I’m not a nice person to be around when I’m miserable.

Good indications of insight, sometimes not, but the attitude statements were really the individual’s self-reflection on how they saw themself, and they ranged from positive, really positive, I’ll say, up this end, to really negative, like to the negative point, where I’m not really worth much, so we had a full range of those attitudes that were evident in the data.

Giving you some good insight in to the emotional state of the people and of the person as well.

Q: Did you do any psychological assessment? Did you look for depression in those notes?

Yeah, there was one person who had a very clear, who was actually in the caseness range or who had clinical depression, who we also set up some intervention, some therapy for. Only one who clearly was, what was interesting, we looked at both depression, looking at the DAS, we also looked at quality of life, and the average quality of life from memory was about 6.7 out of ten, just using a subjective quality of life rating.

Most people were above five, which is probably what most of us would be. It’s interesting, our sense of quality of life is very, very personal. It’s in our own context, and this one person also had as you would predict, a really low rating of quality of life. So there seemed to be, as you would expect, depression means you come down pretty negatively on yourself, so one’s self-attitude often reflects poor emotional mood state, which is a good indicator for that.

If you’re listening to somebody and having an interview with them when you first start working with them, to get a sense of who they are, then that self-evaluation is one of the best indicators into emotional wellbeing, so yeah, a really important question.

So what also became obvious and mostly through one of the participants, Helen, was that this is cyclical. So people continuously move through the cycle. They go from their life adds to their experience of who they are, their knowledge components of themselves, it can actually

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reduce those knowledge components, it can take away some things, or it can add to them, and those experiences feed in to this evaluative component itself, and then go back in a loop, to the who I am.

Let me give you an example here of Helen, who is discussed in this paper.

Helen was somebody who lived in the community in a unit, was supported by attendant carers pretty much throughout the week, she had a companion animal at home, she was reliant on a wheelchair for mobility, and she was talking about, and in fact, she showed me a wonderful CD-holder that she’d made, so it was one of the achievements or one of her outcomes, when we were just talking about things, and that happened in the interview in the transcript, and then she actually talked about how good, so her self-attitude, how good she felt about herself for being somebody who could make things.

It’s not unusual. We all do this. I wish I could make a CD-holder as good as the one that Helen had made. So actually, this achievement had fed in to her self-attitude, but then she described herself later on in the interview, not necessarily connected, but certainly connected from a semantic perspective, a meaning perspective, she described herself as being a craft person. So her achievement, her self-evaluation of what she had done, actually built in to her sense of self attributes, so I’m a craft person, and given that she had discovered she was a craft person, she then talked about, I’d really like to go to TAFE and actually maybe learn more about furniture-making, or making things, so you could see her cycle, just literally from one activity, starting to build further on her sense of self.

Just as Helen was able to build a sense of self through her experiences, there were times when negative experiences reduced a person’s, if you like, sense of having a positive attribute. So those times when you think you can do something and you don’t quite achieve it, can actually stay with you as a negative attitude to self, so it works both ways.

So that was those first two themes, really simple, really straightforward.

The second one that we’ll look at now briefly is staying connected. What were the factors that emerged in these people’s stories that had kept them connected with society? Why was it for these people and some of them were truly isolated, but what were the themes that emerged in their stories that told us these were potential factors to work upon, so that we could maintain connections?

So we’ve got self in the middle, no longer broken down in to its bits, and we’ve got social connection and we’ve got six factors that jumped out of this data.

Now some of you may have heard me talk about this before, because there’s one little bit in here that everybody probably knows is my favourite, I’ll tell you when I get there.

So the first thing that emerged was family, family in all its guises, mums, dads, brothers, sisters, cousins, uncles, aunts, wives. Family was really important. Things like visits with my brother and some of my brother’s friends, so family became another potential for connecting to other people, family the way they are, they’re just here. And for some people, family was the only social connection.

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So on average, ten years later, five to ten years, there was a significant sense that family was the only thing that kept me connected with the world, so I have no friends any more, only my family.

Friends, no, only wife and family, was a comment that I heard many, many times. So this sense of isolation being represented in the data, but that underpins the importance of family, being sometimes the life-raft that’s there, but also being an avenue that we can work through to expand social connection.

The next one was friends, and it was interesting. There were clear indications of friends having been kept since before the injury, not that many.

Out of the twenty, I think I can remember three who explicitly talked about having maintained friendships that had existed before their injury, so it’s a small percentage, but it is there. Friends who they had met during their rehabilitation process, people who they’d really gelled with who they felt really positive about, and sometimes the sense of having lost those friends, because it was hard to maintain connection. And there was also a clear indication that you could stay connected with friends through different media, so you might actually see them person-to-person, but you could connect with them via the phone and texting, or you can connect with them electronically by email or Facebook, so there were different media for people to actually maintain their friendships, and that I think is another important thing that we know now we can explore as we’re helping a person return to the community, so that we give them other avenues of connection.

The next factor that arose was carers, remembering that these people all had very severe brain injuries, pretty much all of them were working with attendant carer support workers, and had a really important message, and that was that those carers were really important in their lives.

For many of them, they had had, unusually, a consistency of one or two carers, sometimes with changes around that, and where there was a consistency, there was clearly a relationship that had been built up, and it was a relationship beyond this is a professional in those. It was almost like a carer friendship.

They often talked about carers as carers, the word carer was actually used, but they said things like, I look forward to the weekends, because I go out with carers.

Having carers come over is really good. I remember one person in particular who had had a birthday party, and the picture of the people at the party was on the mantelpiece, and he said, this is my birthday party, and I said, who was there, and we were looking at them, and there was a sort of bittersweet element to this because probably of the eleven or so, ten people who were in the photograph, eight of them were carers, but it was still a really important social connection for that person, and it was probably the only sure social connection that he’d actually developed over time.

The importance of getting along with carers and the fact that carers also became somebody who could actually help you be active in the community, and do activities.

Pets, or companion animals emerged as a really important factor, for quite a few participants, and no surprises there really. That in fact, having, I love this quote, I think it’s this one. I’m never lonely, because I have Bess.

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Bess was the dog. I’ve changed the dog’s name as well as the people’s names.

(Laughter)

I made the mistake of not doing that once, and people knew then who the person was, because they recognised the dog’s name, so we have the importance of that relationship. Marg and I can also attest to the fact that it was very entertaining and did make me laugh, because Nugget continuously sat on the small digital recorder, and I stopped laughing after a while.

(Laughter)

The other important thing was the connection that pets bring, the connection that this quote about, there’s a lady down the street who has a terrier, too.

If you actually have a dog and there are other people who have a dog, you had this immediate connecting device, that for somebody who might have difficulties interacting or communicating with people, having a dog that is the first step forward in terms of topic generation can be really useful.

It also opened up activities like dog obedience activities where you could meet new people. So companion animals are important for this group of people who we work with.

The next one, this is the one that I like a lot, is social snacks.

Social snacks emerged in the data, and social snacks, it’s not my term, but I love the term, I wish I had’ve come up with it. Social snacks are tangible items or evidence of social connection. So they’re things like photos, certificates, a card from somebody, a postcard from somebody, they’re those tangible mementoes we have when somebody cares about us.

If you’ve ever had to travel away from home, alone, and be away for a long time, you will know how important it is to have some tangible mementoes of the people who you love.

For this group of people who have reduced social connection, and have severely impaired memory, having social snacks, having these things around the room, having a certificate from completing a group community program, having things that said, people, ‘I’ve been around people’ was really important, and it’s interesting, the term social snack was developed by Gardner and her colleagues, and their work is in the ostracism literature, in looking at how do people cope with being ostracised, both if you’re from a different culture and you move cultures and you go somewhere else, what are the things that keep you going, and she identified that people who tended to be culturally isolated or ostracised, these symbolic social behaviours were really important.

It’s a bit like in Castaway. Was it Castaway, where he has the Wilson?

So Wilson is actually, was, a social snack, but I find that film very disconcerting, because of Wilson, but he was a good example. The volleyball was actually a good example of how we need reminders of the fact that we have people around us who care about us.

So they’re all the sorts of things you can use, and they’re particularly important as I say, when you have a memory deficit and you may not remember that you actually won a prize or that you completed a course, or that you actually did know people who treated you as if you

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were somebody who was really important and not just a patient, and not just somebody with a difficulty, so it’s something easy we can do.

Q: Does social media fit in there, having Facebook friends and that?

I think it probably does, and in fact, this research was carried out before there was a lot of social media, where in fact, the thing with the social media issue is making sure that it’s accessible, so some of these people would have in their homes computers, but actually, often didn’t think about putting them on unless it was triggered, because of that executive dysfunction, that it’s not good enough just to have a computer there or an iPad there, somebody has to support you to be able to get to that point where you can use it effectively and I’m talking to people who know that here. But certainly, I think it does, and also, even getting a text from somebody makes a difference, those sorts of things, the Instagram? Yeah, getting a photograph, you can see, I’m not all that good at these things.

(Laughter)

I learn a lot from the people I work with though, I’ll tell you. So I like that they actually shield you from the stings of isolation or rejection, in the sense if somebody is not particularly pleasant to you when you go home and you actually are reminded of the fact there are people in your life who care about you, it really helps get over that.

OK, so that’s where we’re at so far, and the final factor that came through was the self-narrative itself, the self-narrative, and it came through in two ways.

It came through as an activity, so I have my own website so that I can tell people my story, the importance of telling my story, it’s really good to be able to tell your story, but also, I like people to know who I am, we’re all different.

The theme that we’re all different came out quite a lot, this sense of saying to the world, look, I’ve had a brain injury, but I’m me, and we’re all different. You can’t put people together, just because they’ve had a brain injury. We’re all different.

This uniqueness is really important in the world. One person described it beautifully: I’m not a typical brain injury, he said, and I don’t know anybody who is, and I would agree, so that was really important and within the self-narrative, we know, and there’s some lovely work about the self-narrative, that it’s shaped continuously through the ordinary and exceptional experiences of life.

It allows us to get on with life after disruption, it takes in to account the changes associated with disruptive events, it facilitates the meaning-making process, it supports goalsetting for all of us.

It facilitates connection, as a unique individual and it is developed and validated through social interactions with others.

Blumer was really good about describing the fact that you develop your sense of self through your social interactions.

That’s how we construct self, it’s through that interaction with the world and developing a story that goes with that, the story we can tell about ourselves. Not surprisingly, and this

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reflects lots of other research that has been done in this area, there were multiple self-narratives that were evident in this large corpus of interviews.

The first one, and we’ve all met this self-narrative many times in many different guises, the framing the situation and its consequences as a positive event, so one of the participants said, I’m glad I had my accident because it’s made me in to a better person.

Verbatim quote, all my changes have been really positive, so this is this positive reframing self-narrative and in this self-narrative, the injury takes on a productive role, with the survivor’s life story, giving rise to a better person who is motivated to move forward in life.

What’s interesting with this self-narrative was the goals that people in this group who expressed this tended to be altruistic types of goals, this desire, I want to help others, I could put together a program to be used by teenagers about making the right choice about drinking. So the self-narrative itself gave insight in to what the person’s goals were, so several of the people with this positive reframing had this desire to actually prevent other people from having the really negative experiences that they felt they’d had, and in fact, who went on to do this, to tell their stories at secondary schools, to tell their stories to sporting clubs, and to talk about how their life had actually changed, and it gave them not only a sense of self in a way, but also, activities to continue to feed that sense of self.

Q: Jacinta, I’m glad that came up because I was actually at the time thinking, in my mind, people I’ve met over the years, there’s this issue around I don’t want to just take, I want to actually give back, and it hasn’t featured up till now, but I was just wondering, are you saying that that’s actually just for some people or is that what’s been common across the whole concept?

No, it was, it’s really one of the narratives that arose, but it was quite, and again, if you think about how long-term we are, not surprisingly, it was actually quite common within the transcript, that there was a sense of I want to give back, and for those people, it was often the motivation to continue on.

I think probably the other side, or we’ll see, there are some other self-narratives that you’ll recognise and I think with self-narrative, sometimes people actually cycle in to different aspects of that, so you can have a really tough time and actually be thrown in to a different story about self for a little while, so it may well be, although it clearly wasn’t there in everybody.

There were some people who I have to say were in a sense, well, I’ll show you the other narratives, then we can talk about this, but I think that’s a really nice point, that we can actually come back to perhaps in discussion, too, the fact that for many of these people, they weren’t given the opportunity to give back, that it was a sense that I’m just sitting here with not being able to do something positive with this.

The next theme that came out was the people who focus on the present, the living in the here and now.

These first two themes were also evident in Nochi’s work that was published in the 90’s, this sort of positive reframing and then well, I’ve got to just live in the here and now, because God knows what’s going to happen. This thing happened to me, out of the blue, I wasn’t expecting it, and now, I’m just going to actually deal with what I can expect, which is the

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here and now, so those were things like trying to take things day by day, I only live day by day, this theme of living in the present, rather than thinking too much about the future.

So for these people, the sense is made of the injury by including the characteristic of uncertainty.

They talked a lot about not knowing what might be there, as part of the future in their life story. You can never be sure what’s going to happen, so grasp the moment. Do something in the moment, but don’t think it’s always assured. So their goals were much immediate, they were less certain and less far-reaching. In fact, they were often to do with day-to-day functioning, pay my own bills, be able to look after my own finances, keep having the kids over on Tuesdays. I don’t want to change that, and get out of the house more, bowling, cricket, maybe.

So there was an immediacy to these goals, rather than seeing oneself as making a difference to the world, which is absolutely fine. It helps give you some insight in to goalsetting for those people.

Then there was the third one which was the feeling fortunate by comparison, with poorer alternative outcomes, and those feeling fortunate by comparison was often the comparison to people who were in rehab with them.

I’m so much better than all the other people who were in rehab with me, or at Talbot when I was at Talbot, or at Epworth when I was at…. I’m really lucky, so that sense of being fortunate, of being positive about it was only in comparison to somebody else, or maybe in comparison to death, so I’m really lucky because I could’ve been dead.

So it’s this sense that I’ve got to recognise that I’m fortunate in this situation. There are a lot of people who are much worse off than I am, as you can see by that quote. And for these people, it’s actually, their life story really could be titled, ‘I’m Lucky. It Could Be Worse’. So it’s not just I’m really glad the injury, as the first people were saying, I’m glad that the injury happened to me because I’m a better person, this person’s still in that phase of saying, gee, I’m lucky. I’m really lucky because I get a second chance.

So it’s a positive conceptualisation in some ways, and what was really important for these people was grasping that lucky opportunity. So sometimes it was, I was a bit of a layabout and didn’t do anything, and now I’m really going to take this opportunity, I’d really like to be able to work, I’d really like to be able to find somebody I love and marry them, and have a life that is worthy of this second chance. And the final narrative that was present was the people who saw themselves as being a burden, that is their life story was around, I’m just a burden on all those who love me, and it was, if you like, a negative self-narrative.

It’s too much on my wife to look after me, I wish I could do more to help, this sense of not being able to truly contribute.

Now, all of these self-narratives came out and were evident from the interviews with people who all had very similar levels of disability and severity of injury, so it didn’t reflect simply the severity of the injury, but the sense of loss, particularly if they were unable to continue to be, say, the breadwinner, or to continue to be able to provide for family. So for these people, it’s the injury that was framed as causing dependence and precipitating unreasonable burden, and consequently, their goals implied that consideration.

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One man said to move to a place where someone could take care of me, because it’s too much for my wife to do that, so this sense of a goal is to actually stop being a burden to get away, and in talking with people around this, that’s not a continuous self-narrative, but it often underpins how that person is feeling, so there’s always this sense of gee, it’s really tough having to care about me. OK?

So there, if you like, that’s the six factors that were there across the narrative, across the data, I should say, around the factors that help people keep connection, so there are some implications about that and most of these things we actually take care of during rehabilitation and it’s a reminder, that we need to support family ties and we need to support family functioning, and we need to make sure that family are a really important part of the work that we do, because if you’re not working with families, you’re actually making your job quite a bit harder and you’re also not engaging in a support mechanism that can really hold the person in good stead over long-term.

Now that doesn’t mean, and I’ve spent a lot of my life not working with the gorgeous, wonderful families who we’d like to work with.

Families, one of the things about brain injury, it doesn’t say, look, just because you’ve got a dysfunctional family, I’m not going to give you a brain injury.

(Laughter)

It doesn’t walking around, thinking, you’ve had enough in your life. In fact, I think the opposite.

Sometimes I think that there are families where tragedy seems to stalk them. It doesn’t matter how many horrendous things have happened to you, another one could still happen, so you will work with families who would be described as being dysfunctional families and they’re a real challenge, but they’re still families and they’re still a really important part of rehabilitation and just as the fabulous family can support the person you’re working with, working with the family who’s a bit more challenging can also make a difference.

So it is another tick to that, the importance of a holistic approach in rehabilitation across the continuum, across the post-injury continuum, not just for a couple of sessions or an information session here and there.

I don’t think we work enough with friends and I think we need to work more to develop friendships, to help people develop friendships and to maintain friendships that existed prior to injury or develop through rehabilitation. And I know that we have people at La Trobe working on that area and there are people at the University of Sydney, so it’s an area that people are starting to recognise really requires us to directly address it.

Working with carers, supporting carers to be able to give the best possible support, to recognise that it’s a really tough gig, being a support worker. In fact, it’s probably an unrecognised challenge, because it certainly isn’t remunerated. It’s a bit like teachers, childcare workers, support workers, the people we desperately need to be excellent and fabulous are those who get paid less.

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It doesn’t quite work in my world, but it does seem to happen that way, so working with the people who are going to be support workers for the individuals we work with is really important.

I think we need to acknowledge companion pets as being an important part of somebody’s life, and not pretend they’re not there or not recognised how important they can be.

I also think we need to make sure we’re giving people social snacks associated with the work we do with them. Make sure that when you have an achievement, you mark that achievement, that you take a photo of a group or that you send it through, that you actually give certificates of achievements, when there’s a real achievement. I’m not talking about being patronising around this, it’s the reality that this is an important part of all of our lives, and it’s also important that we explore and develop the self-narrative as we work with somebody.

It’s almost respect to that person, to actually have insight in to how they see themselves. I don’t know how we work with people unless we have a good internal conceptualisation of how they see themselves, not how we see them, but how they see themselves. So we’re going to quickly have a look at an example of Emily, who is using this model that is one of the things that I found and I use it as a sort of poster thing, that you can fill stuff in, you can scribble all over, is that one of the things that people who I work with really like about this model is that it comes from people who’ve had that experience.

I don’t say this is the model that was developed by these researchers, this is the model that actually is grounded in the experience of people who’ve had a brain injury and it kind of gives it validity and credibility for the people. We’ve already done this.

It’s simple, it talks about cycles and cycles within cycles. It puts goals and outcomes in the context of the self, and it provides a concrete means of tracking therapeutic endeavours, so we fill it in, and we look at it again. We see if there are any new attributes to add to how the person sees themselves.

Has the intervention, whatever it happens to be, that we’ve just worked on for the last twelve sessions or six sessions, has it made a difference? Can we add something new in to this sense of who you are?

So in a way, this is capturing what we’ve already talked about. You must understand the knowledge components of the person who you’re working with.

When you think about anybody you’re working with today, you really should be able to describe the person, who they are. Are they funny? Do they have a great sense of humour? Think about the attributes that go with that person.

You don’t, and you never want to describe them via their spasticity. It’s not an attribute, it’s actually a functional problem that they’re dealing with, but think about who that person is, knowing the quirky nature of the person.

So you do need to be able to describe both the statements they have internally to describe themselves and to have a sense of their striving statements. What are their goals and they can fit in to these areas.

If you do that, then you can make sure that the goals you develop are self-relevant goals. They should be self-centric, that is for them, not you.

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That’s important, being able to actually help develop that sense of self is part of I think what good therapeutic intervention does.

Then you also need to know about the appraising and the achieving statements, so you highlight and you record outcomes of self-achievements, you’ll have some social snacks in there, and you’ll encourage regular self-appraisal. Given that we know that one of the things that happens when you have an acceleration/deceleration injury to the brain, is that you frequently can experience difficulties with self-awareness or self-evaluation. If that becomes part of the cycle, every time you build on a goal, then that will actually help therapeutically to make a difference in that ability to self-appraise and it’s not a nice pretend self-appraisal, it’s an accurate self-appraisal that you participate in with the person.

OK, same things, you need to connect those outcomes directly to the goals that the person has, so you do your work in cycles and this is what we talk about, and what I talk about with the people who we work with in research.

I’ll let you in on a secret, research is my way of being able to deliver intervention for nothing, but don’t tell anybody.

(Laughter)

Being able to actually say, let’s test some intervention principles and theories and apply them in a research framework means we bring rigour and we develop evidence base that can then be used elsewhere. So you work together in these cycles of make sure you have a sense of how this person describes themselves, what they’re striving for, what they’ve achieved and what and how they see themselves in that achievement.

Now we’re going to talk about Emily briefly and then we’ll stop and discuss and have a toilet break, etc. Everybody happy with that?

OK, so Emily’s a nice example. Emily’s twenty-eight years old, she had fourteen years of education at the time of her injury, she’s beautiful, she’s got a winning smile, she brings a sense of almost clarity to a room, in just her presence in many ways.

She will see that she has some challenging functional difficulties that she’s aware of herself. She was an admin person at the time of her injury, her motor vehicle crash happened five years ago, she had a PTA of sixty-three days, she lives at home with her parents, she has paid support through the TAC, and just to give you some scores on the chart, she doesn’t have difficulties with physical independence or mobility.

She certainly has difficulties with cognitive independence and we’ll see why in a moment and she’s not able to participate in the competitive work environment, she actually has difficulties. When we first started to work with her, she had difficulties in really pursuing meaningful activity at all without support, and she has low social integration.

On the chart, a hundred is the normative score, OK? Just to give you an idea. It’s a bit like, we’re all supposed to be at a hundred percent, and you can see where Emily would be in comparison.

She has some self-awareness difficulties, she actually has significant executive function problems and they go across pretty much all executive function, from holding on to things to

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review them, so from being able to allocate appropriate attentional resources to activities when she’s doing them.

She has significant memory problems. In fact, her ability to hold on to information for more than a couple of minutes without some support is really impaired, so she needs some compensatory strategies from a memory perspective and she has very poor social communication.

I’ll put these scores up here, for those of you who don’t know, LCQ stands for the Latrobe Communication Questionnaire, you can get it for nothing, so it’s not an ad, you can email me if you want the LCQ, but what’s interesting, there’s a self-report version and plus other report version that can be filled in either by a clinician who knows the person well or by a family member. Emily, as you can see by the comparison with the normative data, she scored herself at forty-four.

The higher the score, the more problems you have, and you can see that Emily thinks she has less problems than the normative group, than people who are about her own age, so she’s not aware of her social communication difficulties.

Her mum gives her a score of 102, the highest the score can go is 120. So her mum sees her as having lots of social communication problems, more than three standard deviations above the mean for close others, so we’ve got this discrepancy here, this incongruence.

Emily thinks her communication is fine, and her mum is really concerned about the fact that she isn’t able to interact from a communication perspective.

At the time we started to work with Emily, her overall psychological distress, so the total score on the DAS was equivalent to the 70% off the Australian normative data, so she’s got a lot of psychological distress going on there at the time we started, so we actually did this:

We started with attributes. That is we developed an understanding of her personal characteristics and this is Emily’s perspective on herself. She’s a family person, important to know. She really appreciates family.

She likes dancing in the gym; she likes to be active, also really important to know.

I don’t like bad attitudes and being against people you care about. She has a great deal of difficulty with anything that might represent conflict or anything that might represent disagreement. She doesn’t like to be in tense situations.

She has a sense that people are judging her in the community when she goes out, so she’d prefer not to go out, so that’s a really important part of how you think about working with Emily, because Emily, from having been with Emily in coffee shops, at times, she thinks people are focused on her when they are and when they aren’t, so she finds it difficult to actually recognise when somebody might be looking straight past her and somebody might be actually looking at her. And purple is her favourite colour, hence why her model is in the purples.

Very simple, that’s how Emily describes herself, really important information there from our perspective, that family are going to be an important part of working with her, that in fact, she is an active person, she likes dancing and also, we’ll see her goals, actually, so then we sit down and we develop her self-relevant goals.

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She developed the goals entirely really with time, with support. In the interaction, I would like to change, I would like to get a job, a fulltime job and do things, nothing is coming to mind.

Journalism? No, I think I got out of journalism. She actually had done a journalism degree before her accident; before the motor vehicle crash and it’s interesting that her memory is really stressed in many ways because she doesn’t really remember that she’s done that, but she’s learnt again that she did journalism, but she still has that sort of draw to that as a profession.

It’s interesting, so she would like in the long term to work.

I would like to get back in to driving, she hasn’t been able to get her licence reinstated. I would like to go overseas.

I would like to get in to singing, rhythm’n’blues singing, so she’d like to start singing.

I’d like to be more straightforward when having a discussion with somebody who’s close to me and if what I say is harsh or inappropriate, I’d like to present it with more knowledge along that line, so she’s talking a lot about, even though she doesn’t think she has communication difficulties, she does recognise she perhaps has difficulty getting her message across. She’d like to be able to present things in a more knowledgeable way.

I’d like to be able to start talking to people. I only really do that if something is wrong and if it’s visible, like the toaster is broken.

She’s describing how she has much difficulty initiating, and we all know, it’s sitting there thinking, I would like to talk to these people, but I have no idea. But if you go to her house and the toaster is broken, that’s the first thing you’ll hear. The toaster’s broken! And whatever it is, so her idea generation is really impoverished, but it really does come out and she perceives how it comes out, that all she does is say the concrete, which is not necessarily, and she recognises a great way of developing social interaction and the toaster isn’t always there, so if there’s no broken toaster, there may not be anything to say, from her perspective. And finally, I’d like to be better on the phone, and I’m so blind, it’s not that I can’t read, she says. I hand the phone to Mum instead of finding out more. I would like to learn to ask questions, for example, who are you? What do you want?

(Laughter)

She actually got quite good at doing who are you, what do you want, which often made people feel a little uncomfortable on the other end of the phone.

(Laughter)

But it was clearly a sense of I want to be able to say something. It’s interesting, the phone rings and almost reflexively, Emily picks it up, and then freezes and gives it to her mum, without saying anything, so that reflex of procedural thing, if there’s a ringing phone, a mobile phone or the phone at home, she’s the first to get it and then freezes because she can’t actually initiate or think about what she could say, so pretty interesting goals, we thought, which we saw together, Emily and I, as being part of that social relational activity end of the spectrum.

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She doesn’t have physical, well she’s material in the sense of being able to get a job, but that was very much for her in the activity domain, so she’s down that social relational activity end of her goals. And what we did was we highlighted three goals to work on in twelve sessions. To actually put them all together because we thought that actually singing might be a way of also meeting people who she could start to interact more knowledgeably with, that she could think about some topic generation with, but that also, there would be an activity that she could do that she really enjoyed, so all three of them could actually be worked upon in that social environment, which might have some ongoing impact for her.

This is just one-on-one therapy in a way, but we also then actually, she did achieve becoming a member of a singing group in her community, and you’d be amazed how many singing groups actually are available for people to participate in. Lots of people start and don’t continue is one of the things that people in these groups often say, when you talk to them about supporting somebody to become a member of the group. She participated in public performances on three occasions and they were great for photos for snacking on because there were wonderful photos taken by the group that were real media photos that she could actually have to remind her of the fact that she’d successfully participated.

She was comfortable initiating a conversation with fellow singers in the group. Now we actually worked on this, confident, I should say, specifically, we developed a set of topics that she was comfortable with, we practised them, we videoed them, we reviewed them, we did them again, we did them with her support worker, with her clinician, with her mum and she did them when she was at the singing group and did really well and said, yeah, my confidence, and we rate confidence at the beginning and at the end, and her confidence had doubled, it was still not great, but six out of ten was better than three out of ten.

She felt like she’d developed one friend. We know that our literature says, you only need one friend. One friend or one opportunity to develop a strong tie support can get you through life.

Sometimes a lot of friends don’t necessarily help, but literature says, one person when you go to an event or go to something that you can rely upon, can be really important, and that seemed to be really important for Emily in the singing group, that one budding relationship kept her going there.

She had, as I said, we got the picking the phone up and saying, who is it? That can be shaped and could continue to be shaped, but the fact that she was able to say something did help her sense of achievement and also, it came out in measures.

She doesn’t see herself still as having real communication problems, but we addressed how she dealt with difficult communication interactions and that changed. She was able to practice the way to cope when people didn’t have any idea what she was talking about or when she didn’t have any idea what she wanted to talk about. So we worked on it from a coping perspective and that did make a difference to her functional communication and her mum saw that that’s getting close to the normative range, a score of fifty-four on the LCQ and three months later, when we went back to Emily to see how she was going, so we had twelve weeks, three months’ break and then start a new cycle, to address a new goal once we had some consolidation, we see her immediately after one month and then three months and then start another cycle, and you can see that her DAS total score is now around the 46% at the end of therapy and at 50% at the centre, somewhere around that. So we have really good

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outcomes that Emily was really proud of, they were really significant achievements in a small amount of time, in twelve sessions.

That’s not a lot. One of the things that is really important about Emily, she was so primed because she hadn’t had therapy for quite a long time. She’d had a lot and she’s a really good example of how it’s not always continuous therapy that makes a difference, that bursts and doses of therapy are really important as we go along and I’ve been on that one for ages.

So this is what she says herself:

I’m more confident. If I don’t understand something now, I’ll ask questions to make sure I understand it.

That was a really big achievement and something that she had every reason to be particularly proud of and to evaluate herself as somebody who could actively say, look, I’m not sure what you’re getting at. Can you help me? Can you give me more information?

She saw herself as being much more proactive than she ever had been. She talked about her voice getting stronger, and the fact that she had a really good emotional response to singing and that was really important, a great achievement, and I’m thinking about helping with, and she talks about the name of the primary school here, musical because the primary school that she went to, she’s still back living with Mum and Dad, the primary school has a musical every two years, and she was thinking that maybe she’d volunteer to do that, so we do get that potential activity loop.

Now all of this is supported, it’s not in a sense by her mum, by her support worker, there was one worker in particular who was excellent and had been working with Emily pretty much since she had gone home and also, making sure we found out about her unique social context. The fact that she was close to her own primary school. Were there opportunities there?

We didn’t find a rhythm’n’blues singing group, but we found a group that did lots of different sorts of singing, and she was happy with that, so there’s a lot of work that happens within that, and as I said, so we know that, Emily’s mum was really important in the videos, that I’ve taken off [the presentation] because I didn’t trust them working. You would see that.

She did develop one friend and if you support the interaction around developing friends, you can do that.

We had her wonderful carer, we also didn’t have any pets in this environment. We had artwork, I have to say, that was an important part of how Emily saw herself and we did take lots of photos of things and recorded how things went for Emily because of her memory problem. She really needed to be able to review what she’d done and it’s so easy now with being able to take photos to do that. And her self-narrative really had that shade of, to start with, very much feeling like she was going to just be with her mum and at home, and it started to develop with, maybe I can do something for other people now and actually help out with the school musical, so there’s a change in her self-narrative.

OK, so it is a cyclical process. I think you can work together really simply, it can be the person’s model, Emily has her model for how she’s actually moving forward, and that’s it.

(Applause)

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So…..you probably don’t get your photo taken if you don’t clap.

(Laughter)

Do you want to have a bit of a stretch, and it would be really nice just to talk about your responses and feelings around this. This is the best part about these.

INTRODUCER: So if you can stay, please do so, and I forgot to say when I started, that I think this is such a lovely topic because it’s actually Brain Injury Awareness Week this week. There are lots of different events going on and I think this is a really big focus for us to bring in to those events and something that can really help us make a practical difference to people. If anyone happens to have some free time on Thursday lunchtime, Epworth is doing, just having a couple of people talking about their experiences and things that they’d like to learn and also Libby Callaway’s talking as well, so pop in to the Richmond auditorium at twelve o’clock, you might even snare a little piece of lunch, it won’t go very far, but if you get in quick, you might be OK, so please feel free to do that as well, so have a quick stretch, if you quickly need to go to the toilet, do that, but I think then, two minutes, and then we’ll start some discussion.

RECESS: 01:21:06