Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
Dr. Melinda Kavanaugh:
70% of the kids in my studies had never been given any guidance by anybody. They winged it, they treated their loved one as if they were babysitting, maybe treated them how they thought they would like to be taken care of. Really, the genesis of the YCare came out of my clinical practice and it came out of the words of the youth that I researched.
Jeremy Holden:
Hello everyone and welcome to Connecting ALS. I am your host, Jeremy Holden. Memorial Day marks the unofficial beginning of summer, with schools across the country winding down the school year and families planning vacation. But, ALS does not take summer off. Kids often have to take on the role of caregiver in some form, and this presents unique challenges. Training methods designed for adults may not address the needs of young caregivers on either physical or emotional level, because kids aren't just smaller adults, they're kids.
Since 2015, the YCare Youth Caregiving Program has provided support, training, and resources for kids who help care for loved ones with ALS across the country. I recently caught up with Dr. Melinda Kavanaugh, professor of social work at the Helen Bader School of Social Welfare at the University of Wisconsin Milwaukee, and the architect behind the YCare program. We talked about her work empowering kids to be effective caregivers, and her recent efforts to expand the program globally, starting in South Africa. Dr. Kavanaugh, thanks as always for being with us on Connecting ALS.
Dr. Melinda Kavanaugh:
Absolutely, it's my pleasure. Thanks so much for the invitation.
Jeremy Holden:
Yeah, always happy to have you on. Today we're talking about something that I know is near and dear to your heart, and that is the youth of America and increasingly the youth around the world. The YCare program has been around for a while, but for our listeners who maybe aren't aware of it, what is YCare? How did it come into existence?
Dr. Melinda Kavanaugh:
Yeah, so YCare is a program that was created after my many years of clinical work being a social worker in neurology, seeing kids doing all kinds of care tasks in the home for their family member, and really not having any guidance in it. Talking with kids and saying, "How did you know how to disinfect a feeding tube?" They would say things like, "Oh, I just watched someone do it," or, "I guessed." As I started moving into more of an academic role in becoming a professor of social work, my research really has focused and centered on the role that kids play as caregivers. Some of my earliest research, again, I asked those questions as part of research projects, "How do you know what you're doing?"
70% of the kids in my studies had never been given any guidance by anybody. They winged it, they treated their loved one as if they were babysitting, maybe treated them how they thought they would like to be taken care of. Really, the genesis of the YCare came out of my clinical practice and it came out of the words of the youth that I researched and interviewed in my very early parts of my career. Because I am a social worker and a medical social worker, and everything I do is really focused on interdisciplinary work, I went to my colleagues at the Medical College of Wisconsin and said, "Hey, how do you guys teach adult caregivers?" They're like, "It's what we do." I said, "Do you want to do it with kids?"
Jeremy Holden:
Yeah.
Dr. Melinda Kavanaugh:
Yeah. After they had the first initial, "Wait, what?" It was really an iterative, really lovely process trying to figure out, what does a PT need to do? What does an OT do? What about a speech therapist, a respiratory therapist? Long answer, to started out in clinical practice, used the voices of the kids, and then engaged all of my amazing colleagues in an interdisciplinary way to come up with a program that gives kids the skills and the support and the peer engagement, and quite frankly, the fun to know what they're doing when they've been doing care for many years, many of them for many years.
Jeremy Holden:
Yeah. The need for that support, for that training really comes through. I've had the really fortunate opportunity, well, fortunate is certainly not the right word, but I've been blessed to be able to talk to kids who do serve as caregivers and hear about some of their experiences and share some of their stories with listeners and then through other platforms. That really comes through, the need for that support. It comes through with the resource guides that you put together for kids, for young adults, for adolescents who are acting as caregivers. Through the YCare program, do you have a sense of scope of how many kids, how many youths have gone through that program over the years?
Dr. Melinda Kavanaugh:
Yeah, absolutely. It started in ALS, but we've expanded it across other neurological disorders. We have now also done it in the Alzheimer's and related dementia community. We actually just did it recently for children and youth who are helping to take care of their sibling who has severe autism. Inclusive of all of these groups, we've had over 140 kids participate in the YCare program at various locations around the US and in South Africa.
One of the things that I am incredibly proud of is that we have had about 74 healthcare professionals go through the training. They all go through a half a day training with me on what is YCare and how do we work with kids. These are the most amazing healthcare professionals, because then they go back into their profession and their community and their clinics and their hospitals, and they now take with them, oh wait, kids are providing care. I'm going to approach my practice just a little bit differently and I'm going to think about how I do that home visit or how I do that clinic visit. I'm incredibly proud of that aspect because I think we're making a difference not just in the lives of the children, but we're making a difference in a really complex and interdisciplinary group of healthcare professionals who touch people's lives every day.
Jeremy Holden:
Yeah. You mentioned South Africa, you presented at the International Alliance of ALS/MND Association's annual meeting in the Allied Professionals Forum. You talked there about the efforts to bring YCare to South Africa. It stands to reason that kids are acting as caregivers not just in the United States, but around the world. But, just talk me through the decision making process that this was the right time to start to think globally. Why was South Africa the pilot? Why start there? What's on the horizon?
Dr. Melinda Kavanaugh:
It's a really good question. Started with South Africa because I have been doing research and project work with some of the most extraordinary neurologists and colleagues and professors in South Africa since 2015. It was a normal extension of a research project we did, just trying to get a sense of, are there kids providing care to parents and families with ALS? What are they doing? What do they need? We have this program in the US, this YCare program, but we knew that it really wouldn't translate to other cultures. We need to be adaptable, we need to be flexible. We need to create the program in a nimble way to where we can say, so if we're going to do a module on speech and communication, do people in this location, not necessarily country, but geographic location, do they even have access to speech generating devices? If not, what does that module look like to help kids communicate with their family members?
As an example, when we did it just this last time, we did it at several times in both Johannesburg and in Cape Town. I brought with me a very large stack of donated laminated alphabet boards, picture boards, because families don't have access to high-tech communication devices. Those boards were snapped up so quickly by all the kids. They said, "Can we keep them? This is going to help us be able to talk to my grandma or my grandpa or my dad or my mom." Doing it in South Africa has been extraordinary and it's taught me a lot about how we take a program that has been developed in a country with so much. How do we adapt it to be just as effective in a country that doesn't have as much?
Doing it in South Africa has opened up. You asked about the global impact, if you will. It's really opened up the recognition that there are places all over the world. I was in a meeting recently with the Alliance, and they were talking about reach. You just look at the continent of Africa, and we know so little about what's going on with children and families and ALS and other complex neurological disorders throughout the whole continent. It was really an eye-opening opportunity. We engaged the community, we engaged healthcare providers, we engaged families. How do we adapt this?
We were able to not only adapt it to the community, but we've also translated the YCare program into Zulu. It's in process of being translated into both Afrikaans and Tswana, three of the 11 official languages in South Africa. That is, it's key. You can't go places around the world with a program that was developed in the US and not say, "Hey, we're going to not only blow it up, if you will, and make it work for your community and your country and your culture, but we're also going to make it accessible language-wise." Those are cornerstones of where we're at with the YCare program now.
Jeremy Holden:
Interesting dynamics. I'd thought about the translation component of it, that you have to talk to people in the language that they speak. The resource component of it struck me. I hadn't considered, and probably shortsighted of me, but it's fascinating to think about some of the cultural differences of how families organize and operate in different pockets of the world, in different regions, in different countries, in different parts of different countries. That's a fascinating component. What were some of the challenges that you maybe didn't anticipate and had to think on the fly about, how are we going to make this work here?
Dr. Melinda Kavanaugh:
I don't know that I didn't anticipate it, but maybe one of the biggest challenges, so we've run into this in the US as well. Families are often reluctant to acknowledge that their child is involved in the level of care that they are involved in. There's a lot of assumptions in the US around abuse and neglect and having your child removed from the home and foster care systems. As a social worker, I have dealt with this all of my career. Right?
Jeremy Holden:
Sure.
Dr. Melinda Kavanaugh:
I get that from the US perspective. What changed a bit in the South African perspective was, care is very normal. Care is very normalized. But what is not normalized, if you will, is disease and living with disease that is very stigmatizing and often has, and this is not just South Africa, this is certainly lots of places around the world. But it's not just that it's stigmatizing, it's that there's an assumption that you've either done something wrong, you might have been cursed, something's wrong with your family. What we really had to dig in and understand was it wasn't just that families might be reluctant to have their children attend because the care component, but families might be reluctant to attend universally because of the stigma and the potential shame associated with "outing themselves"-
Jeremy Holden:
Right.
Dr. Melinda Kavanaugh:
As living with this illness. What we changed some in the YCare program was we also did it with families as well. We've never done the YCare program with adults here in the US because we've seen that children clam up, if you will. They aren't going to open up and say what's really struggling with them when their person living with ALS is right next to them.
Jeremy Holden:
Sure.
Dr. Melinda Kavanaugh:
But in South Africa, because there was so little resource for any caregiver, we had so many adults and so many families saying, "But, can we come too? We need to learn as well." We did make an additional adaption that was different and we hadn't expected it, to address this stigma and shame, but also the need for the whole family to participate.
Jeremy Holden:
Fascinating. Yeah, the stigma and shame is something that we are learning more about and something that is going to, I think, inform a lot of the work going forward. What, Dr. Kavanaugh, is on the horizon now for the Global Neuro YCare Foundation?
Dr. Melinda Kavanaugh:
Thank you, yes. We actually have several things on the horizon. We have several cornerstones. YCare itself is the program that we've been discussing. As part of the foundation writ large, YCare is more about the youth, the caregiving, the advocacy, the resources, and the education. It encompasses the YCare program, but it's also much larger. Some of the things that we're working on right now are mental health in children and youth who are caregivers, and building connections with organizations around the world who are in lower and middle income countries. Not that we aren't engaging with higher income countries, by no means, we're absolutely engaging with everyone around the world.
Jeremy Holden:
Sure.
Dr. Melinda Kavanaugh:
But, a lot of our partners in more lower income countries have fewer resources. What do we know from the US perspective, from maybe the European perspective? How can we bring those to organizations that serve children and youth that aren't focused on ALS, but now they will know more about ALS. They'll know more about chronic and complicated neurological disorders writ large, which is really focus of ours at the foundation. We're continuing to translate not only the YCare program, but all the different books and resources. Our graphic novel is also being translated into Tswana, which will be its ninth language.
Jeremy Holden:
Wow.
Dr. Melinda Kavanaugh:
The YCare program, we're also working to get the whole YCare program translated into Spanish, which will be phenomenal for here in the US, but also with a lot of the countries that we're starting to partner with in South America offering this program in, again, a more accessible way. The last thing is advocacy. I work with several country specific organizations that have brought young caregiver programs to their countries. Because we are a global organization, we can connect them together and we can connect them with the things that we've been doing here in the US and what we've learned from other countries, such as South Africa, to provide more supports and advocating for really countrywide programs, policies, and services for these kids.
Jeremy Holden:
It really gives a sense of a global community that's coming together to try and make ALS livable and accelerate the search for treatments and ways to cure ALS. Dr. Kavanaugh, thanks so much as always for your time.
Dr. Melinda Kavanaugh:
It's my pleasure. Thank you so much for having me, Jeremy, and thank you for all that you do to really get the advocacy out for children and families with ALS. I appreciate it.
Jeremy Holden:
I want to thank my guest this week, Dr. Melinda Kavanaugh. If you liked this episode, share it with a friend. While you're at it, please rate and review Connecting ALS wherever you listen to podcasts. It's a great way for us to connect with more listeners. Our production partner for this series is Citizen Race Car. Post-Production by Alex Brower, production Management by Gabriela Monta Keen, supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.