In this episode of Impact Stories, our Director, Professor Christine Imms speaks with Dr. Rose Babic about her experiences as a parent partner in research that led to her being awarded an Honorary Doctorate by Australian Catholic University. The conversation explores the power of lived experience in shaping research, services, and support for children and families living with disability.

>> Read more about Dr. Rose Babic in our News Item.

 

Listen to episode 1 of our podcast series “Impact Stories”, featuring Dr Rose Babic.

Podcast Transcript

Introduction

Hello and welcome to Impact Stories, a Healthy Trajectories podcast. In this episode we’ll be talking to Rose Babic about recently being awarded an honorary doctorate.

Christine

So welcome, my name’s Christine Imms and I’m the Apex Australia Foundation Chair for Neurodevelopment and Disability and the Director of Healthy Trajectories Child and Youth Disability Research Hub. It’s my absolute delight today to be talking to Dr Rose Babic, who is one of our parent partners in research and has contributed enormously to the ENVISAGE program of work, but not only ENVISAGE. So, we’re here to talk to Rose about her experiences of being a parent partner in research and to hear more about your story, Rose. Can you start by telling us just a little bit about yourself and how you first came to be involved in the ENVISAGE program?

Rose

Thanks, Christine for that lovely introduction. So as mentioned my name is Rose, I am a parent of two boys who I parent in the northern suburbs of Melbourne with my husband Mel and my parenting journey is something that… well, prior to my parenting journey I have a background in studying psychology and education and I think most of my learning actually happened after that, which was when I started parenting my children. Eric, my first born, was born with a quite significant brain malformation and that was diagnosed when he was four and a half months of age. And so that set my family on a journey of learning and developing and panicking and all sorts of changes that we weren’t expecting. And so that’s sort of where my pathway to understanding or trying to understand disability and the impact that disability had was my own first-hand experience. And along the way, I think for me, I met a lot of families and started to sort of share our experiences and I started to contribute to organisations that wanted some lived experience, a questionnaire, come to a focus group, simple things like that and one of the organisations I was involved in was the Cerebral Palsy Support Network. I think Cerebral Palsy Support Network were the ones who introduced me to the research, the ENVISAGE research and that was probably almost 10 years ago and I’ve just continued ever since and that has actually evolved and developed into helping with other areas of research through Healthy Trajectories, MCRI and other organisations.

Christine

I think just recently Rose you were celebrated. We celebrated your contributions to research over those 10 years with the Australian Catholic University awarding you an honorary doctorate. That’s quite an amazing achievement.

Rose

That was quite a big deal, quite a surprise, quite an honour, quite you know I had no words and I usually have a lot of words so that was quite bewildering but it was really lovely and it was a really lovely ceremony and lovely to be recognised. Australian Catholic University is where I did my diploma in education many years ago so it was a really lovely kind of full circle moment for me to be able to come back and share that honour.

Christine

Yeah, it was really good. When you think about that as sort of 10 years down the track there must have been moments when you were involved in research where kind of pivotal things happened that either kept you in or made you think you might stop or what kept you coming back.

Rose

Well, I think probably not knowing what was ahead and just taking each moment at a time. So ,each opportunity came up and then I would consider, “What’s going on in my life at the moment. What do I think I can contribute? Do I have anything useful to say?” And that probably was a significant thing for me or a moment where I understood that I didn’t have to present what I thought the researchers that I was involved with wanted to hear. So, I think having a sort of an experience of childhood disability that didn’t fit the inspiration arc or you know, we did this and then everything was okay. We fixed our problem. Let me tell you how we fixed it. Or this is what you want to hear, you want to hear the good the good stories that’s going to help shape your research so that people are going to fund it and that people are going to want to read about it. So, I really was hesitant in the first few months I think when I was contributing. Hesitant, didn’t quite know what to say, didn’t quite know what to share. Did it matter? Was it valuable? And I think having research partners such as yourself and the other research partners that welcomed me and said to me, “It’s okay, whatever you want to share, whatever you think is important, all of that’s important because all of that shapes what we do, how we shape the research and then how that research finds the right people and is implemented into the real world that actually makes a difference”. And so it was learning that early on or having research partners that were really welcoming that allowed me to understand that, so that I felt comfortable in sharing exactly what my lived experience was without filtering it and without making it palatable. And I think that could be part of what has helped me to continue because no matter what’s going on in my life, I felt that it didn’t matter. I could still share it.

Christine

Yeah. And the value of that was felt in terms of you could see what your contribution was within the product of the research.

Rose

Yeah. because I was in contact with so many families who really need this type of research. they need their stories heard. They need to be able to say what it is that would make a difference in their life. And everyone’s got a different perspective on that, but it’s about being interested in all the perspectives and then being able to think about what are the common threads of those perspectives. What are we hearing the most? What’s going to make most of the difference? And I think that is really why I felt comfortable because I was, throughout my life and as I was parenting my son, I was meeting lots of families and I was hearing things and I was able to share them. And a lot of my peers were saying, look, I don’t feel necessarily comfortable with sharing myself and getting involved in research, but would love it if you could tell these people that we need this, this, this and this. And I was like, yeah, sure, I’ll do that.

Christine

So it’s more than your voice.

Rose

More than my voice, yeah.

Christine

Can you tell me a little bit about what involvement in research really looked like for you and perhaps a little bit about how you balance it? You’ve got quite a big life in terms of the roles and responsibilities and how do you balance something like this with those other responsibilities?

Rose

Well, I think I didn’t, as I said, I didn’t look at it from a long-term perspective. I just thought, “Well, okay, at the moment we need to research, we need to give some feedback on some draft proposals for workshops, (which was for ENVISAGE), so I can do that. That’s manageable.” Always checking in, saying, “Look, if something happens with my son or if I have to pull out, is that okay?” You know, checking that that was okay and it was always okay, more than okay. So that made me feel comfortable. And so, you know, you do a little bit at a time and then you I guess it opens up the doors to further research or “Well now, we’re looking at, we’ve found out this information but now what we want to do is we want to pilot the program. So, we’ve tested the feasibility of the program and now we want to pilot the program. We need a parent peer to help pilot the program. Would you be interested?” (So I think to myself) “Okay what does it involve? One night a week, a couple of hours of preparation. that’s manageable this week, or that’s manageable for next month.” So I think it’s not looking at the whole 10 years down the track picture, but it’s that, manageable steps, what’s involved in each step and really asking those questions about what’s involved and having that honest thought, well, it’s like, so sometimes you don’t want to disappoint people, so you’re a bit reluctant to get involved, but the team that I was involved with was always like, at any point you can say, “I can’t this week”, and so really finding that type of partnership is really important as well.

Christine

So that sort of respectful relationship around understanding each other’s needs.

Rose

Yeah, and the other point I want to say about that is being comfortable. You’re sharing quite a bit of yourself when you’re involved as a parent lived experience contributor so there might be times in your life where you feel like an open book and you’re really able to tell your story and your child’s story and you’re feeling comfortable about that but it also comes with a bit of an emotional load so I think making sure that you have that support around you that that through giving your experience there may be some parts of it that you might have to step back from or you might have to have some quiet time afterwards, a bit of a debrief and making sure that that is actually time for that is included as well.

Christine

And did you find that that was needed both from within the research team and then beyond, so from your family’s perspective and others?

Rose

Yeah, mainly a lot of friends who were able to sort of debrief with me as well and say to me that it’s okay to feel exposed sometimes. But for me, the payoff, I guess, of exposing what I’d gone through, in terms of having that contribute to people understanding, because I think once researchers and the health services, once they understand that, that goes a long way for being able to prepare families and support families in their everyday experiences and interactions. So, for me it felt important enough to take that risk as long as I had that built around me.

Christine

So, there’s a risk and then there’s supports for that, but then there’s also the visible benefit for others of what you contributed.

Rose

Not to sound sort of like oh it’s all for others but also for yourself there is a two-way street with research because by having to articulate what you’ve gone through and there’s a traumatic component to it but there’s also this component that you’re able to filter your experience through different lenses sometimes A little bit of time has passed since you’ve had that experience, so you’re able to kind of reevaluate it and think, well, “What did that do in my life? What did that change?”, and “How is that helping me to understand my child and family and move forward?”. Because you’re always moving forward. So I think sometimes looking back helps you to think, well, I’ve come a long way. really changed or oh gosh I won’t do that again. It’s kind of a two-way street there. It’s helped me quite a bit in my own family’s life.

Christine

That’s quite an important message isn’t it for others thinking about that they might like to be involved in research. I’m going to ask you a little bit about that in a minute but I wondered have there been any particular moments that you would say this was a really pivotal experience for me and the research that I have done either in ENVISAGE or the other projects that you been involved in.

Rose

I think to see the ENVISAGE research, which was, let’s look at these workshops, let’s test them out to a few families, let’s really think about it, to see ENVISAGE receiving a national NACP grant for implementation across Australia, was just surreal – because, in research, you’re not often going to get your research picked up as quickly as that. No, no. So that was a pivotal moment, I think. That was, it was really a good, it was, it’s fabulous. It was a really big learning curve as well. So that was a really, really big thing, big deal.

Christine

Yeah, yeah. Thank you. So, I’m thinking about other people. Maybe somebody else is out there listening to us talk and have thought about research or never thought about research. Is there something you would say to them to think about what might be involved and what they might contribute and what they might gain from being involved?

Rose

I would say that the first thing that you gain is that you understand that your experience matters and that what you’ve gone through what you are going through and what your family and child are going through, and it may not be child and family research, it could be in other areas, but really just to know that it matters what you’ve gone through, what you’ve experienced, and you have a unique perspective that textbooks can’t give, you know. You really, I think to sort of start with partnering with people that you feel comfortable with. So, finding research partners that are researching things that are important to you and that you’ve got experience in, but also that you feel comfortable with, that they’ve given you some guidelines around, this is what we want to do, this is sort of the time, it’s really important to find out what the time commitment is. how long they think, is this just an application for a grant that may or may not go anywhere? Is this something, a grant that they’ve received money for that’s going to last for three years and how many hours they’ve sort of allocated to you? You might just want to start off contributing to sort of a focus group or even just doing some questionnaires to gauge some of your experience. Or you also need to know that you can be involved right at the beginning of research as well. So you can help to identify what areas the research direction needs to go into. So that could be just conversations as well. I think conversations is where things lead to, just like you and I talking now. You know, it can go in all different directions. So I think first thing is to sort of find somebody who wants to have a conversation with you and somebody who recognises that your experience matters and then go from there.

Christine

Yeah, so finding a partner that you can be comfortable with.

Rose

Yeah, and how do you do that? That’s kind of the question as well. So if you’re receiving treatment for your child within a health service, you could ask whether they know of anyone within that area that might be looking for research contributions and emailing some people that are researching the area that you think that you’ve got some lived experience that you want to share and just putting your hand up because in most cases, researchers are really, really open to that and keen to say, yes, we’ve got somebody who really wants to contribute. And contributions are not sort of a tick box tokenistic thing. They’re looking for people who really want to understand where the research needs to look and where it wants to go.

Christine

What would you say is the core piece of partnership, a really positive partnership with researchers? Because you’ve given examples that people can start out by being a participant in researcher, you could be in a focus group or you could do a survey, but we’re also talking about your role which is, yes you have done that and continue to do that, but the value of your contribution to the research that I have engaged with you around has been your role as an investigator, as a partner in the design and delivery and you know collecting data and analysing data and writing papers. You’ve contributed to all of those pieces and that’s really quite phenomenal though and recognised in your honorary doctorate. So what is it that you think is really some key kind of messages about partnerships that you would suggest, important, I think?

Rose

Curiosity, openness to extending your role not feeling like… so you’ve got career researchers and you’ve got parent researchers and they can work side by side together. And I think in the beginning it can be a bit daunting because you think “These are the researchers and I’m just the parent or I’m just the I’m like the sort of I’m a bolt-on to the research,” but it takes a little while to get confident to do that but I think really just indicating that you want to move forward or if you have a curiosity. I was just always, I’ve always been a curious person so if you hear that okay the next step is we’re going to do this, just ask the question how can I help? I’ve got a few hours next week. Is there anything that I could do to support this? Is there anything that I could do? So again, it’s that little step-by-step process. I don’t think I’d walked into the team and said, right, let me…

Christine

“Can I have a doctorate, please?”

Rose

Yes, have a doctorate or let me analyse all your data for you. Not that I’m doing all the data. Probably more, you know.

Christine

No, but you’re a genuine contributor to all the phases of research. And you’re right, it is something that evolved over time.

Rose

It evolves over time.

Christine

We evolved a partnership over time as well as.

Rose

Building trust and feeling, I think you’ve got to feel that you can contribute, and that comes from, and I think we’re talking about what advice I’d give to people who want to get involved, but also to career researchers who want to involve people, I think it’s really about building trust and building comfortable situations where you can have conversations, where you can say, look, you don’t have to promise anything, you can just say, look, we’ll see where it goes. And at any stage, if we feel like we can go further, then let’s continue to partner and if you feel like that’s it for you and you’re done and you want your Tuesday mornings back or whatever the case will be then that’s okay too. So just to keep talking.

Christine

So that flexibility is really important as well. So Rose we might finish up and I just wanted to say that at Healthy Trajectories we’re always looking for partners in research whether they be young people who are growing up with a disability or a developmental concern or their family members. And so do look out for opportunities through the Healthy Trajectories website. But I wondered if you’d like to have the last word, Rose.

Rose

Thank you. I just want to say thank you. Thank you for this opportunity. You and I have worked together for almost 10 years and I would just like to say thank you for the warm welcome to this parent research and partnering and I think it’s just been a really wonderful experience and I just want to say thanks for being open to it.

Christine

You’re so very welcome and a genuine congratulations to you on your honorary doctorate. I think these are positions that are not given away easily or lightly. It was absolutely well deserved and wear it with pride. Thank you.