Episode #75: Family Impacts on Children When a Parent has Aphasia: A Conversation with Brooke Ryan

Aphasia Access Conversations

Ellen Bernstein-Ellis, Program Specialist and Clinical Supervisor for the Aphasia Treatment Program at Cal State East Bay, speaks with Dr. Brooke Ryan. We'll discuss her research looking at the impact on children of having a parent with aphasia and the role of the speech pathologist in addressing these issues. She’ll share her efforts to understand the lived experience of the children, the parent with aphasia and the parent without aphasia.

This year, our shows are highlighting the gap areas identified in the Aphasia Access White Paper authored by Dr. Nina Simmons-Mackie. This show hones in on gap area #10: Failure to address family/caregiver needs including information, support, counseling, and communication training. For more information about the Gap areas, you can listen to episode #62 with Dr. Liz Hoover or go to the Aphasia Access website.

Guest Bio:

Brooke Ryan is a Postdoctoral Research Fellow, from University of Technology, Sydney, Australia working in the Aphasia Centre for Research Excellence, the aphasia CRE for short. Brooke is very passionate about improving the lives of families living with aphasia. Her research is distinct, because she is a speech pathologist, working interdisciplinary with clinical psychology to adapt assessment techniques and mental health interventions. Brooke's research has spanned many areas from living successfully with aphasia to the management of depression and anxiety post stroke. A specific focus of her work is on young stroke and in particular the impact of parental stroke on young children

Listener Take-aways

In today’s episode you will:

• Learn about some of the mental health impacts that children who have a parent with aphasia may experience and the gaps in providing services to this group.
• Hear about the advice a mother gives about the care she would recommend giving families when a parent with young children experiences aphasia.
• Learn about how the Behavior Change Wheel model may help identify barriers and facilitators in achieving desired behaviors.
• Identify some specific roles and resources a speech pathologist may offer to families with children who have a parent with aphasia. Check out the show notes for a list of educational materials.

This transcript has been edited for conciseness:

Ellen Bernstein-Ellis (interviewer):

Welcome to the episode Brooke. Thank you for being here today. And for being our guest and getting up at the crack of dawn for this episode. And for juggling Covid work-at-home logistics with children. I am so grateful you made this all work today. Thank you.

Guest: Brooke Ryan

Thank you. I'm very privileged. And it's an honor to be invited to talk with your podcast. Thank you.

Ellen Bernstein-Ellis

I would like you just to share a little bit about yourself with our listeners. What can we do to describe who you are to them?

Brooke Ryan

Sure. Oh, that's a big question. To answer it simply, I'm from Brisbane, Australia. I have two young children that keep me really, really busy. One of my favorite things to do, just to share a little bit about myself, is having a cup of tea on my front porch with my dog while watching the sunset. It sounds a little bit silly, but it's something that I've found that's really mindfully relaxing. I really do enjoy that.

Ellen Bernstein-Ellis

We all have to find our approaches to replenishing, especially during this particularly stressful past year. So, if a sunset can do that for you, I think that's just wonderful.

Brooke Ryan

That's exactly right. And just to set the scene and where I'm talking to you from.

Ellen Bernstein-Ellis

Do you have a favorite clinical experience that points to the value of incorporating life participation approach to aphasia into your clinical work?

Brooke Ryan

Oh, great question. I guess it's my favorite clinical experience because it's had a silver lining, but when COVID hit back in March last year, the aphasia groups that usually meet in person had to stop meeting. There was a real push to try and get online aphasia groups up and running. And in Australia, we didn't have this model of service running frequently, and especially not through our community organization, the Australian Aphasia Association, so I was really involved in helping get those groups running. And I've been volunteering ever since. It’s kept going since the pandemic, highlighting to me the benefit of aphasia groups in helping to reduce social isolation. I've really noticed a lot of things about those groups where we've been able to connect like young people with aphasia, or people with aphasia with similar interests, such as travel. So that's been one of my favorite clinical experiences, really, is experimenting with those online groups.

Ellen Bernstein-Ellis

Thank you for sharing that. And you actually just triggered something I wanted to mention, because you work with the CRE, The Australian Center for Research Excellence. I want to remind our listeners that they have produced an absolutely phenomenal resource for all of us. They have collected a whole bunch of resources. When it started out, it was like eight pages, and I think it's now up to like 15 pages, really tiny print of all these resources of how to do telepractice and other aspects related to COVID. Things that we need to think about and resources that will just help us navigate this unusual time. So just a great big thank you to your organization for creating that.

Brooke Ryan

Yes, that really is an amazing resource. I would like to tip my hat to a postdoctoral researcher within the CRE, Dr. Ciara Shiggins. She put a lot of effort into putting that resource together and keeps it up to date. It is available on our website You can download it in the form of an Excel spreadsheet. It will take you hours to go through the wonderful resources that have been contributed by the international aphasia community.

Ellen Bernstein-Ellis

We’ll put a link in our show notes to that resource. I had the honor and privilege of getting to attend your recent Aphasia Institute webinar. You presented some of this initial research, which is why I was so excited to ask you to be our guest today. You absolutely got me from your very first slide because it had a quote from one of your colleagues, Dr. Rochelle Pitts, which said, “Since having my own children, I suddenly felt an overwhelming sense of responsibility, responsibility to the parents with aphasia supporting their children, whilst adjusting to the life changing impacts of stroke, and the children navigating a changed family.” Oh, my goodness, that just cuts to the core of my heart, actually. Thank you for coming today and sharing this important work.

Brooke Ryan

I really, really do wish that was my quote. But as you say, it was Rochelle's and I love it too. And it really does drive home the reason why both of us do research in this area,

Ellen Bernstein-Ellis

You both are parents of young children, right?

Brooke Ryan

Yes, Rochelle actually has four children. I've two and we often meet quite frequently. So our families are very close.

Ellen Bernstein-Ellis

Is that what really spurred you to publish the 2018 case study with Dr. Pitt? Could you tell our listeners a little bit about that case study?

Brooke Ryan

This case study is one that I will always remember. It's just one of those cases that really highlights the importance of this area. Rochelle and I set out to speak with families about their experiences of living with aphasia, and we sought to seek perspectives from all family members, including children. One particular family was interviewed, there was a single mother living in a rural area in Australia where limited speech pathology and psychology services were available. She had a young son who was the first one who responded to her. He actually found her after she had a stroke and was required to call the ambulance. We had the privilege of interviewing the mother living with aphasia, her mother, and the son about their experience some three years after the event. It was pretty full on.

So the son was age five, at the time of his mom's stroke, and then age eight, when we were talking to him. The family went through a huge amount of change during those three years, as you would expect. The grandmother actually had to move in and provide a tremendous amount of practical support to the family. We we're talking to all, both the mother living with aphasia and the grandmother. It was really evident in their accounts that the stroke event itself represented a significant traumatic experience for everyone involved. And it really did mark the beginning of a new timeline for their family.

Ellen Bernstein-Ellis

Thank you for sharing the story. It really gets to the core of why this work is so impactful.

Brooke Ryan

Yes, definitely. What really stuck out with me with that case study was that the grandma reported that the young boy had been affected and to use her words here, she said, “It took the spark back from him for a little while.” He wasn't as outgoing, and he was a bit guarded. You could really see that in our interview with the little boy. It really highlighted the need for both crisis support and ongoing psychology. It raised the question for me about the role of advocacy as speech pathologists when working with families. In this situation, it was a single mother living with aphasia. She really did report struggling being able to advocate for those services for her son.

Ellen Bernstein-Ellis

Wow, that's really powerful. I'm grateful that it resulted in you asking what research can we do? What do we know? What can we do better as speech language pathologists? I'm going to back up a bit and ask you to share with our listeners now, what do we know about the prevalence of adults with acquired communication disorders, who are parents of children 18 and under?

Brooke Ryan

The data on this is very, very patchy, and it is a very under-researched area. And so acquired communication disabilities is often embedded within broader types of disabilities, such as general stroke and brain injury. And so the literature out there focuses more broadly on those aspects. It is difficult to get the natural percentage of prevalence of parents with acquired communication disability. It’s a research project that I'd really love to take on if we can find a way.

There is one sort of case or elevator pitch, if you like to call it. Often, I make the case that one in 10 strokes occur in adults younger than 50 years of age. And so that is the life stage where we're going to see parenting responsibilities, and we know that stroke incidence in young adults are rising. So, it is likely that speech pathologists will have people or parents with acquired communication disability on their caseload.

Ellen Bernstein-Ellis

Wow. Absolutely. And, you know, according to the literature, with impacts do children who have a parent with an acquired communication disorder often experience? What might we be seeing?

Brooke Ryan

Again, this literature is sort of coming from the broader literature of brain injury and stroke. So it's not specific to acquired communication disability. But I guess if we think about communication disability as a result of aphasia, for instance, we know that it can influence family functioning. And that can certainly impact interpersonal relationships. And if we think about the family, with parents and children, it can then have its own effects to parent and children interactions. And so we know that the inability to hold meaningful conversations can lead to family breakdowns, conflicts, and misunderstandings. Also, the literature suggests that children can also be required to undertake caregiver or parental roles, which can all lead to changes in the family dynamic, the family system, and parent-child interaction. There really is limited research in this area, and particularly in relation to aphasia.

Ellen Bernstein-Ellis

This all highlights the importance of the work you're doing. We've talked about the broader issues in communication disability at large, but can we hone in and talk about what the impacts might be on children who have a parent with aphasia, specifically?

Brooke Ryan

The literature is pointing to that children's well-being may be at risk. There have been studies which indicate that children experience increased stress, mental health issues and behavioral problems. There was a longitudinal study back in 2005 of 82 children, and they were aged between four and 18, whose parents experienced a stroke. Parents with communication disability were included in the study. And the study found that 54% of children displayed depression and behavioral difficulties immediately after the event. And by 12 months post stroke, nearly 1/3 had ongoing problems. So, this research really does highlight that there may be long term implications for children.

Ellen Bernstein-Ellis

The figures you just shared mirror some of the literature about the prevalence rate of depression in the adults with aphasia. For my next question, I want to find out a little bit more about how the mental health and behavioral changes look differently across the different age groups? Or is that research still waiting to be done?

Brooke Ryan

This is something that we really do need to understand more. We need to understand what factors are predictive of these increased mental health and behavioral difficulties, because that will be key to help us understand how we can better provide services to children that may be at risk of developing long term problems. Our qualitative research has really highlighted to me that we needed to consider that a parenting an older child can be more demanding and complex. And I guess that's no surprise. But in the context of aphasia, when one language is involved, this adds a complexity. We really do need to start considering the sustainable sort of rehabilitation services for families dedicated to understanding and helping the impact of aphasia at different stages of child development. It's really just about learning more.

Ellen Bernstein-Ellis

Absolutely, so much more to learn. What kinds of services may SLPs provide to children who have a parent with aphasia? What might that look like?

Brooke Ryan

I think we can have an enormous role in this area, especially if appropriately trained, and competent. We can expand our role into counseling and family therapy services, if we are trained, and I certainly know speech pathologists, especially in the UK, that have dedicated courses and are skilled in family therapy. But I think at the very least, we do have a role in information provision, and especially also with connecting other families with children together. It's been one of those silver linings of this pandemic, that we can expand out group-based services, like what I mentioned before, to connect people. I would really love to see parents and families living with aphasia, connecting more and joining in and having young stroke groups or parenting groups.

Ellen Bernstein-Ellis

That would be wonderful and being able to have Zoom allows us to have interest groups a little bit more easily, because the geographic region isn't as much of a barrier when you go on Zoom.

In 2020, Shrubsole, Pitt, Till, Finch and you published the first known study that explored Australian SLPs perceived needs, current practices and barriers and facilitators to working with children following parental acquired communication disorder. Seventy-six SLPs, were included in the analysis of the online surveys and your theoretical model utilized the Behavior Change Theory to study the issue. Specifically, your study design and analysis were framed within the COM-B model.

And that stands for capability, opportunity, motivation—domains that influence behavior. Before we even discuss the key findings, I thought it was such an important model, would you mind sharing and explaining the benefit of this particular framework? The lens that you use for your research study?

Brooke Ryan

My colleague, Kristine Shrubsole, the lead author on that paper, does use this model a lot. I would like to tip my hat to her again to her because she uses these behavior change theories to better understand how we can change our practice. And they are useful, especially when trying to understand a new practice area, and what might be the barriers or facilitators to be able to do something. The COM-B does have a number of advantages in that we use the term it can be mapped or linked to something called the behavior change wheel. And that behavior change wheel is really useful to develop strategies for changing behaviors. It can be really explanatory and how the different elements can influence behavior. So it's a really practical model, even though it is quite complex and very research based, but to be able to look at clinical practice and saying, what is the barrier? And what can we do about it?

Ellen Bernstein-Ellis

Reading about it in the article really framed it so beautifully. For me, it laid out how to think about the problem.

Brooke Ryan

Definitely. And so like things like capability refers to someone's capacity for achieving and behavior. That includes things like their knowledge and their skill. And opportunity is factors that prompt behavior, that make it possible. So things like our physical environment, our resources and our social influences. And then motivation comprises sort of reflective processes, so our intentions and emotions. By breaking the COM-B up like that, it's a really nice way to be able to study what's happening in current practice.

Ellen Bernstein-Ellis

Let’s talk a little bit about the survey, then if that's okay. What did the survey reveal about the frequency with which the speech language pathologists actually saw clients with aphasia who had children 18 and under?

Brooke Ryan

This is a really interesting finding for me. The majority of speech pathologists, we had 76 in our study, I think about 61 of them reported that they had seen parents with communication disability who had children under the age of 18, in the past 12 months, and they had children across a number of age ranges. So they had seen parents who had children as babies right up until parents who had children who were 18.

Ellen Bernstein-Ellis

Wow. And in terms of perceived importance of this issue, did SLPs identify working with children as an important issue?

Brooke Ryan

Definitely, I think it was about three quarters of our participants indicated they believed there is a need to improve the services provided to children of parents with acquired communication disability. They describe things such as needing improved resources and better access to children and a provision of more holistic services. So they're definitely seeing it as an important issue.

Ellen Bernstein-Ellis

Okay, we know that the majority of the of the clinicians are seeing clients who have young children, 18, to birth, and the SLP is reporting that it's quite important that we incorporate some type of work with this. How often did SLPs report incorporating education, training or counseling of children into their sessions?

Brooke Ryan

It was a really stark finding that the majority of participants reported that they either never or rarely provided support or counseling to children. So over 80% of their sample said that they didn't have this either because of the opportunity or other reasons.

Ellen Bernstein-Ellis

Wow. So that's almost a disconnect. We know that it's happening, we know that it's important, and yet we haven't been able to provide the service. That leads me to ask if you could speak about the barriers and the facilitators as well that you identified in the study to providing these services.

Brooke Ryan

Using this COM-B model, we noticed that the opportunity barriers were most commonly identified with access to children being the most frequently reported barrier. One participant explained this, how the lack of access to the children resulted in a lack of attentiveness about the need to provide education to this population. And they described it as “out of sight, out of mind.” And interestingly, participants also reported a continuum of family involvement that influenced their practice. So, it either acted as a barrier or facilitator. Some speech pathologists reported that families were engaged and supportive. This really facilitated the service provision. Whereas some SLPs identified a lack of education and training as barriers to engaging children and services.

Ellen Bernstein-Ellis

It’s really complex, right? There are just so many factors that we have to account for. And one of the interesting findings I noted, was the barrier reported by at least some of the SLPs of parents preferring not to involve their children as a way to protect them in the situation. Did this seem to be age related? Or did you notice other factors? And do you have any ideas about addressing this concern?

Brooke Ryan

Interestingly, speech pathologists did report that some families were reluctant for their children's inclusion in rehab. This is something that I would really like to dig deeper into, and I'm not sure we really have a clear-cut answer. Our survey was really just a surface sort of view of what's going on here. I think we need to understand this a lot more, especially from a number of perspectives, because our other findings have found that parents really do want to be involved in are in favor of including children in rehab. I think there's a big difference depending on their child's age, in terms of how we're going to include them and the types of services we provide.

But we also need to be mindful here also, especially thinking back to the case study that I introduced at the start. We should be guided by the family's wishes in terms of what they see as protecting children. We need to understand the circumstances around that a little bit more. We may need to work closely with psychologists or other multidisciplinary team members if we do think that trauma-related experiences have been involved.

I think there’s something very different to working within a family-centered care model and setting parenting goals for our stroke rehab. We do need to be careful that it's not a blanket (decision to) include all children in therapy, because there is a little bit of research in the area of trauma that's indicated that if we talk too much, or too little about a potentially traumatic event, it's one of the clear risk factors for the development of more post-traumatic distress. I think it's really important to be guided by the family, but also be mindful to explore this area more.

Ellen Bernstein-Ellis

Sounds like we need to do some more research to try to understand what models will be helpful and we might be able to use.

I'm still struck, Brooke, by that big gap in terms of, we have the number of children who we think have ongoing impacts with mental health or behavioral issues. And then we have a large percentage of SLPs seeing families with children. And yet we're not providing (services). Would you say that children are an underserved group? How did your COM-B model help to identify ways to close that gap between the perceived need to improve services and behavior?

Brooke Ryan

I think that is one of our key findings from this study that speech pathologists are working with adult clients in this area who are likely to be parents, and they are on our caseloads, and there is potential to include them in our rehab. There is that gap that the majority of speech pathologists are rarely providing services. We need to look to being able to engage in these areas more and either provide services directly or indirectly, such as information provision and communication partner training, and potentially even counseling type services and referral to other health professionals.

Ellen Bernstein-Ellis

Let’s go on to the more recent study that you're getting ready to publish, which ran two online focus groups on Facebook. One with five parents with aphasia, and the other (group) was six spouses of someone with aphasia. These two groups were parents of a total of 23 children, 18 or younger. Your goal in this study was to gain insight into the lived experience of parents with aphasia, or of their spouses. Could you provide some details as to how you ran these groups and what you were asking or trying to hone in on?

Brooke Ryan

I have a love of qualitative research. I do like to understand the “why” a little bit more. So we used this qualitative study design and it was a real novel qualitative study design using Facebook. We used it for a number of reasons. But we did want to understand the lived experience of parents or families living with aphasia. We created two groups on the Facebook platform, one for parents with aphasia, and one for family members. We invited people to these groups and they were open for eight weeks. We were asking qualitative questions, like, “tell us about your life and family life with aphasia” or “tell us about how parenting has been impacted.” The groups were moderated by myself, Rochelle, and a final year speech pathology student and participants engaged in these discussions and talked with each other about their experiences.

Ellen Bernstein-Ellis

And the children in the study ranged from, like eight years old, but some of the parents had children up to age 18. Is that correct? So big range of age.

Brooke Ryan

Yeah. And I think that was even a parent of a young baby who was just like six months old.

Ellen Bernstein-Ellis

Wow. Well, let's talk about the four themes that were developed from the data for the group of parents with aphasia. And let's start with this theme that you labeled fractured family identity. Can you share some of those sub themes that came from that main theme?

Brooke Ryan

Yeah, so stroke in aphasia, has been described as identity theft previously, but this study really confirmed to me how aphasia influenced and was closely intertwined with each participant's identity as a parent. What we saw was that stroke and aphasia recovery really impact all participants’ ability to be a parent. There was this real tension between stroke recovery and fulfilling parental role. That really stood out to me. So things like bonding and attachment with younger children were impacted. People often reported missing out on their children's lives, regardless of their age. I really noticed that there was particular difficulty experienced with parents during transition periods and as children grow older. So a quote that really stood out to me was, “It was difficult at the school environment. I wonder if I didn't have a stroke, if I would have been a school Mum during reading days or tuck shop, but I couldn't. I felt like I would have loved that.” I think the quote just says it all.

Ellen Bernstein-Ellis

Absolutely. And I would imagine there's just a lot of struggle around the communication you need to have as a parent. Sometimes it's hard enough when both people have their full skills. If one person has a communication disability like aphasia, that parent’s discussions around parenting must become even more difficult.

Brooke, the next theme was poor emotional health. Could you please describe this data?

Brooke Ryan

Yeah, so parents, whether they were new parents or parents of older children often reported feelings of inadequacy and self-doubt surrounding their parenting efforts. And so difficulty parenting lead to feelings of frustration, anger, shame, self-doubt, worry, and even low mood and people said things like “not being the mom, I should have been.” And “aphasia has been tiring, emotionally draining, frustrating, and feeling that you haven't done enough.”

Ellen Bernstein-Ellis

Okay, those are powerful statements. It’s really wonderful that you were able to get this perspective from the members.

And then you had a third theme called motivation to return to active parenting. So what subthemes came from that from that area?

Brooke Ryan

Children were a very motivating factor that was really evident in our data and really motivating for recovery and return to independence and parents roles. So people say things like, “the biggest motivation was to absolute smash my therapy for their children”, and people did report positive experience when engaging in therapy with their children. And often people talked about reading books together, learning the alphabet together, counting together. Children really helped with that acceptance and maintaining a positive attitude and pressing on despite really challenging times. And so someone even said, “I cope, because I have to cope. Because moving forward is the only way to get through it and hopefully get past it.”

Ellen Bernstein-Ellis

Really strong reflections on motivation and how important that is. Then you had a final theme, individualized support addressing family needs. Could you explain that a little bit?

Brooke Ryan

It was really about that practical and emotional support being necessary to get to continue fulfilling family responsibilities. People really did need that reliable support system of family members and friends to keep them afloat. That support was really important from other families with children, too. And being able to include daily and functional therapy tasks related to parenting, as I mentioned before, most often reading tasks. One person said the most effective treatment for him was and still is reading aloud to his son. And often this was incorporated daily into their lives. And being able to write letters, for instance, to someone's daughter, and being able to read that to her in the future, were really concrete therapy tasks addressing their needs.

Ellen Bernstein-Ellis

Three of these themes were also seen in the group of spouses, and the first, fracture family identity, isn't surprising. What did you hear from your spouse group members?

Brooke Ryan

Likewise, it changes to how family actively participated in life together as a family were really evident. And so one person described it as “we've gone from a family who used to be super active together, to a family that goes on long drives.” And so there was this sense of being less flexible within the family dynamic and a loss of childhood, people often described. And through avoidance of activity. So one quote from a spouse really stuck out to me that she remembered she decided not to go to the school’s trivia (event), because she had envisioned her partner with aphasia’s frustration at not knowing the answer and not being able to get it out quickly enough.

Ellen Bernstein-Ellis

Sure. I bet there's some other stressors for the spouses as well.

Brooke Ryan

Definitely. So loss of income is a huge stress and loss of shared parental roles. So especially for parenting tasks that require communication, most of the burden shifted to spouse or guardians. Someone described this as basically overnight, I became a single parent or full time caregiver.

Ellen Bernstein-Ellis

So we had fracture family. And then you also found poor emotional and relationship health was another theme from the spouses.

Brooke Ryan

People really did report this loss and grief as a spouse or a father or mother. And, again, to use the participants words, someone said, “Sometimes I do feel weird and wish that the outside world can understand that it’s so strange to constantly be mourning the loss of a spouse who is physically still here.” And that just struck me to really describe that impact.

Ellen Bernstein-Ellis

Absolutely. That's a lot of adjustment for a family to make. So did spouses have any other sub areas that were different from the individuals with aphasia?

Brooke Ryan

They tend to report that they kept their communication to a minimum and describe feeling socially isolated and really missing the husband or partner that they used to be able to talk to, as well as difficulties with parenting, leading to frustration, anger and worry as well. And one thing also is having the time to be able to provide self-care, really. And when they did try and sort of have self-care, that there was guilt associated with that. A lot of people did mention needing to go to counseling to be able to look after themselves.

Ellen Bernstein-Ellis

These are really, really powerful. And the last theme that you identified from the spouse group, was individualized support addressing family needs. So what did your analysis find in that area?

Brooke Ryan

So within our rehab services, there really was a variety of involvement of families, and especially children. And it was on a continuum. So some children were actively included in the rehab and stroke services really embraced that aspect of parenting. Whereas for other people, a lot of advocacy was required. And there was though this tension of when involved in therapy services, their caring responsibilities placed on children, and there was a continuum of burden. And I remember a quote that someone said that they were really annoyed when a nurse in rehab said to the young daughter, who was just seven, that you're going to have to help mommy and daddy when they get home. And they just didn't want that pressure placed on this seven-year-old.

Ellen Bernstein-Ellis

Sure, wow. So these things really start to inform us and maybe, hopefully, direct the different ways that we can put services and supports in place to better address the needs of these families. Are there any other key takeaways from this study that you want to highlight?

Brooke Ryan

The key messages for me were that it was important to have this relationship and psychological focused care. It’s really, really vital. We do need to have a connection and engagement as a family and work towards improving relationships. I think we can do that in a number of different ways. And I know Felicity Bright’s work on relationship as a philosophy of practice will be key for that.

Ellen Bernstein-Ellis

Absolutely. And hopefully, we'll get to feature her in an upcoming episode. So I'm going to say stay tuned for more on that. But that really struck me in reading your work, the centrality of relationship centered care.

Brooke Ryan

Definitely, I think that's absolutely key.

Ellen Bernstein-Ellis

And you also remind us to be open to, quote, “meaningful ways to involve children across the care continuum.” So let's talk for a moment about what resources an SLP might offer to children. I'd like to start by sharing children's books, because I love children's literature. And thanks to you, I downloaded a new book. Alfie the Dog with Special Aphasia Powers to my Kindle. Do we have ample literature? Is this an area where we can enrich the choices?

Brooke Ryan

There are a few resources out there. But I think there's always room for improvement. I think this is an area that we can expand, more particularly, I really am in favor of co-design of resources. I would love to get children's perspectives on what they need and what they want from a range of ages. Because my son's five, he's often on YouTube and learning things through YouTube. So I wonder what sort of mediums are out there that kids will really relate to and I think that's definitely an area we can explore more.

Ellen Bernstein-Ellis

I will put the title of Alfie the Dog with Special Aphasia Powers, he's kind of a superhero, in our show notes, but I’d also like to give a shout out to Maura Silverman and the Triangle Aphasia Project, because I was really struck at an ASHA convention I went to where she presented her project called Princess Crumpet, and the Baker of Batter Town, and it's a puppet show. And actually, the Triangle Aphasia Project website has a page dedicated to resources to educate and support children. So we'll put that link and the books you've suggested all in our show notes.

And talking about co-design, I'm just hoping that this show is going to inspire work exploring what types of resources and approaches are most influential. I'm going to give a shout out to two of my graduate students, Elise Nishiki Finley and Corey Riley. They decided to research what types of supports teens with parents who had aphasia wanted. And while we assumed that they'd like the idea of an online support group or something of that nature, which I've seen as a model for teens with cancer, our very small focus group told us that they would rather have liked participating in fun group activities with their parents and other parents with aphasia and their kids. So something social and normalizing as a way to meet others. It was just a great reminder of the importance of making sure your stakeholders have a voice in developing the solution. And that's a whole other topic for a future episode for us, as well.

But I want to go back to what you think about communication partner training with children. It seems to me like individualization will be critical. Every family has its unique dynamics. But how you might approach training a five-year-old, maybe on YouTube, will be very different from a 10 year old, and then a 14 year old. Do you have any thoughts about that?

Brooke Ryan

Yeah, I completely agree. And the data from our Facebook groups did tell us a little bit of insight into this. And so parents who have younger children, I noticed, they were talking more about focusing on teaching their children nonverbal communication, and waiting and focusing on interaction aspects a little bit more than perhaps, we may do with older children. And I think, as you say, older children do want to find creative ways to engage with their parents and maintain that relationship. And while I think that's absolutely critical at any stage, I think it's going to be tailored, depending on the age of the children.

Ellen Bernstein-Ellis

Well, another recommendation that you made, which really gave me a pause was that you said that SLPs might want to consider training and parenting programs. Could you expand on that idea for our listeners?

Brooke Ryan

I think if we are to start practicing in this area more frequently. It is a really good idea to be aware of evidence-based training techniques to give parents positive parenting solutions. So there are a number of evidence based, really high level evidence programs out there. And one example in Australia is the Triple P Parenting program. And I think as speech pathologists, we can take the ideas from this program and be able to adapt them for the specific needs of people living with aphasia.

Ellen Bernstein-Ellis

It’s so important to think about that, that there's evidence out there about how we might want to approach parental training, so thank you for that. And you also suggest parenting related speech goals. Can you provide some examples?

Brooke Ryan

So again, from our study, participants said things like they want to be able to read aloud to their children. They want really practical stuff, such as providing chore instructions, for instance, on how to pack a dishwasher and help with homework. And things like food words were particularly important for young parents. The amount of times I know I've talked about food with my children, and children get really frustrated when you get the wrong word. And again, meeting other parents and children living with aphasia are really practical goals that we could be working on.

Ellen Bernstein-Ellis

Those are really good ideas. And very, very pertinent, and again, relationship-centered and individualized. So thank you for suggesting them. And of course, as we wrap up, I'm going to ask you this last question. Is there anything else you wanted to address about this topic that I haven't asked you about yet?

Brooke Ryan

So I guess we've covered so many topics in this talk. But I would like to leave the final words to be from a spouse of a parent with aphasia. And so to quote her, “In general, people underestimate how important parenting is. Even more than marriage, it changes the way you live your life, the way you spend your time, the people you hang out with, your hobbies and interests, your spending, and definitely your language. With aphasia recovery, you could spend at least half of your time with parenting specific goals, and it wouldn't feel heavy handed. I hope that clinicians can take this seriously and not just add it into what they're already doing.” And I’d just like to leave you with that, because it's so powerful.

Ellen Bernstein-Ellis

Absolutely. And I want to thank you, because I'm hoping this show will inspire work exploring what types of resources and approaches are most impactful and encourage other speech language pathologists and researchers to explore this more. So it just is so vital, I think, to the lives of the people we're serving. So, Brooke, I just want to thank you again, for being our guest today. This was just lovely, and an area that I'm so grateful you and your colleagues are working so hard to research. Thank you again.

Resources

Aphasia Centre for Research Excellence: Resources

https://www.latrobe.edu.au/research/centres/health/aphasia/resources

Triple P online training

https://www.triplep.net/glo-en/the-triple-p-system-at-work/training-and-delivery/

Alphi, The Dog With Special Aphasia Powers, Kindle Edition, by Gail Weissman MS MA CCCSLP (Author), Amy Koch Johnson (Illustrator)

https://www.amazon.com/Alphi-Dog-Special-Aphasia-Powers-ebook/dp/B08SVSGHTY

Supporting children after a family member’s stroke- Stroke Foundation fact sheet file:///C:/Users/PF%205/Downloads/FS18_SupportChildren_WEB%20(1).pdf

Parenting after a stroke information

https://www.heartandstroke.ca/stroke/recovery-and-support/relationships/parenting

Aphasia - A Guide for Spouses and Older Children - The Australian Aphasia Association

https://www.youtube.com/watch?v=k_BMgCF7U_Q

How are children affected when one of their parents has aphasia?- The Australian Aphasia Association

https://www.youtube.com/watch?v=jgbdJuviTIE

Facebook group FAST Parenting After Aphasia (A group for parents who have had a stroke and who have been through the challenges of raising a child after a stroke. Just like 'mothers group', a place just to chat about issues in raising a child after your stroke (good, bad or funny stories!)

https://www.facebook.com/groups/307860196007933/

Tap Unlimited Children’s Programs:

https://www.aphasiaproject.org/about-us/our-projects/?v=7516fd43adaa

References

Shrubsole, K., Pitt, R., Till, K., Finch, E., & Ryan, B. (2021). Speech language pathologists’ practice with children of parents with an acquired communication disability: A preliminary study. Brain Impairment, 22(2), 135-151.

Ryan, B., & Pitt, R. (2018). “It took the spark from him for a little while”: A case study on the psychological impact of parental stroke and aphasia on a young boy. Aphasiology, 32(sup1), 189-190.