From Overwhelmed to Informed: Helping Caregivers Navigate Health Information

Medical terms, treatment plans, and new information can feel overwhelming when your child has a serious illness. In this episode of Caregivers SHARE, Mark Brown, MDiv, talks with Samantha Ransone, PhD, and caregiver Harry Walker (“Big Harry”) about health literacy, or understanding and using health information.  

Harry’s son, “Little Harry,” was diagnosed with acute myeloid leukemia (AML) in 2023 at age 2. Big Harry learned how to communicate with the care team as his son went through treatment.  

Throughout this episode, the group talks about steps caregivers can take to get the medical information they need in a way that makes sense to them. Caregivers will learn practical ways to ask questions, talk with their child’s care team, find online health information that they can trust, and use AI as a starting point but not a final answer.  

Caregivers are reminded that no question is too simple. Speaking up and sharing how they learn best can help families take part in their child’s care. 

A special thank you our host, Mark Brown, director of Spiritual Care at St. Jude; our expert, Samantha Ransone, director of Medical Content and Patient Outreach at St. Jude; and parent Harry Walker. 

Learn more about Harry’s diagnosis of acute myeloid leukemia (AML) on St. Jude Care & Treatment and Together by St. Jude™. 

Learn more about Harry’s treatment and his story.  

This episode was recorded on October 7, 2026. 

St. Jude does not endorse any branded product or organization mentioned in this podcast. 

Episode Transcript

Narrator (00:02 – 00:37) 
A child’s diagnosis of cancer or another serious disease is difficult. Families, guardians, and loved ones experience a range of emotions and often need support related to their child’s diagnosis and treatment. St. Jude Children’s Research Hospital brings you Caregivers SHARE, a St. Jude Podcast. SHARE stands for support, honor, advise, reflect, encourage. In this series, you’ll hear stories and insights directly from the experiences of St. Jude families and care providers. 

Mark Brown (00:37 – 01:33) 
Hello everyone. My name is Mark Brown and I serve as Director of Spiritual Care at St. Jude Children’s Research Hospital. I’m honored today to be hosting this episode of Caregivers SHARE.  

Navigating the healthcare system can feel like learning a whole new language. Medical terms and abbreviations and complex information can make it hard for caregivers to understand what’s happening and then feel confident asking questions.  

In this episode, we’re talking about health literacy, why it’s important to speak up when something’s unclear, and some practical ways that caregivers can get the information they need in a way that works best for them. We’ll be talking with Samantha Ransone, who is Director of Medical Content and Patient Outreach at St. Jude, and to Harry Walker, one of our patient’s parents. Sam, would you please introduce yourself? 

Samantha Ransone (01:33 – 01:54)
Yeah. Hi, I’m Sam and I lead a team of communicators and educators who specialize in developing and designing easy to understand care and treatment information for patients and families. Health literacy and patient education are the core focus of my team, so this topic is definitely one I’m excited to talk about with both of you.

Mark (01:54 – 01:59)
Thank you, Sam. Glad you’re here. Harry, would you introduce yourself and tell us a little bit about your journey?

Harry Walker (01:59 – 03:40)
Yeah, absolutely. My name is Harry Walker, and I am a caregiver because of my son, who is also named Harry. So we are the Harrys. I am Big Harry and he is Little Harry. And on January 13, 2023, a day I’ll never forget, Harry was diagnosed with AML, which is acute myeloid leukemia. 

In simpler terms, leukemia is a cancer that affects the blood and bone marrow. He is now 6 years old and his journey has been long. It has included two bone marrow transplants, which his second transplant was November 2024. He has also faced graft versus host disease now, which was a side effect of transplant, which really affects your immune system that affects your body. It has affected Harry’s gut, liver, and stomach, and we continue to battle that today. 

But the good news is Harry is in remission, which is the most important part. We are grateful for his medical team and all our family and friends along the way. This journey has not been easy, but it’s one we don’t take for granted. So this is why this conversation is so important to me. 

And most recently, I just joined the Patient Family Advisory Council. This is so important to me to really be able to give back as an advisor, to give back as a caregiver, to give back as a parent, just to be a voice for us, right? Someone has to be an advocate for our children and for caregivers and for patients and parents. And that’s why I chose to be on this council. So I’m really excited to be here today and to have this conversation. I think it is that important to be able to get what you need from your medical team.

Mark (03:40 – 04:22)
Thank you so much. Sam, we know that everyone learns and processes information in different ways. We know that what helps one caregiver may not be particularly helpful for another person. But we know there are tools and strategies that can help caregivers sort of strengthen their confidence in their health literacy. 

So when a child is going through treatment and families are getting all this information and a lot of it is with a vocabulary that is perhaps brand new to them. You know, what are some of the strategies and things that you can say to help families who are in that overwhelming kind of environment?

Sam (04:22 – 05:38)
Yeah, definitely a good question to start with. You know, health literacy is not about how much somebody already knows. It really is about making sure that they receive information in a way that they can understand and use. And so, to your point that everybody learns and processes information differently, caregivers can really start by telling the care team how they learn best. You know, whether that means hearing an explanation, reading written instructions, seeing a picture or demonstration, watching a video, some combination of any of those things. If caregivers can be honest about how they prefer to receive information, that’s only going to help the care team be able to give them information in a way that they can use. 

I always encourage caregivers to also ask for information in small steps, use a notebook or in this day and age, maybe a phone app to take some notes on to keep track of questions, to understand what materials are being given to you. And then, we have a lot of people who speak a lot of different languages. And so also being willing to say, I would really prefer this in a different language that I can understand a little bit better is also really helpful.

Mark (05:38 – 05:41)
All right, very good. Can you relate to that, Harry?

Harry (05:41 – 07:34)
Yes, absolutely. When you think overwhelmed, emotional, confused, when you hear your child has cancer, you’re trying to process something that no parent should ever have to be prepared for. On top of that, you’re hearing medical terms, you’re hearing treatment options, you’re hearing instructions, a lot to absorb when you’re hearing this information for the first time. 

You know, so my real advice would be, you know, start where you are. It’s OK to say you’re overwhelmed, you know, with your medical team. It’s totally fine to say you’re overwhelmed. This is a lot to process. It’s OK, like Sam just mentioned, it’s OK to ask, can we slow down? Can we start over? You don’t understand how to prepare for something like this when you never dealt with it before. So it’s OK to admit you’re overwhelmed. 

I would suggest write down questions. A lot of times you get questions after you leave appointments, right, and think about things after the fact, right? So write down your questions, bring them back to your care team and understand how we can partner together to understand those questions. 

Bring someone with you, right? You know, you’re not in this alone, right? So bring someone with you whom you trust that can ask different questions on your behalf as well as you can talk to and feel comfortable with, you know, being a caregiver under this, you know, horrible situation. 

And one question I would encourage parents to ask is, what is the most important thing that I need to understand today in the moment, right? It’s a long journey. It’s not a one day thing, right? It’s a long journey. So understanding what’s important today can possibly and hopefully calm things down, put things in perspective and really, I tell myself, take it one step at a time, you know, one day at a time, one step at a time. But it’s OK, like I said, to say you’re overwhelmed, to work with your medical team, to understand what you don’t know. I think it’s important to be able to voice those concerns.

Mark (07:34 – 08:02)
Exactly. Harry, I wonder if you can think back to your time when Little Harry was in treatment and think about a time when maybe it was hard for you to ask questions or maybe for you it wasn’t that hard. But sometimes, you know, I think there are dynamics in relationships and maybe there are questions that you want to ask, but for some reason or other, find it hard to bring up.

Harry (08:02 – 09:21)
Yeah, I think it’s simple for me. I had no idea what leukemia was, right? And so it’s literally asking your care team, you know, can you explain what leukemia is in simple language, common language? Can you write down a picture for me, right? I’m a very visual learner. And so that’s what my medical team did for me. They took out a piece of paper, they wrote on the paper how cells look and how leukemia cells form and how it attacks your bone marrow and where it comes from, really understanding what leukemia was because I didn’t know. 

And it helped me understand what we were battling, right? It kind of put things in simple form versus saying, you know, you have blood cancer. Well, how did you get blood cancer? Where does blood cancer come from? So being able to see it visually, write it down, really helped me out. 

So I would encourage people to ask for written examples, ask for things that you understand, that you can process to really understand, you know, what is your diagnosis? Because every diagnosis is different, right? But when you understand, you know, every child is also different. And when you understand that we all learn differently and we all process information differently. So like I said earlier, it’s OK to feel overwhelmed, but it’s also OK to simplify things, ask for written explanations, ask for things you can take home to understand so you can really follow up on the backend.

Mark (09:21 – 09:36)
Very good. Thank you. Sam, I’m back to you, but what are some of the questions that caregivers and patients really should feel comfortable asking their care team, you know, even if they’re not sure it’s appropriate or maybe too simple to ask?

Sam (09:37 – 10:49)
Yeah, you know, it’s interesting because the research on communication between patients and families and their health care providers has consistently shown a gap between what patients and families actually want to learn and what health care teams often provide as education on a particular topic. 

And so caregivers should feel comfortable asking any question that helps them understand and participate in their child’s care. Nothing is off limits. If you don’t understand what was explained to you very practically, I think that you can ask things like, can you explain that in a different way? Can I repeat back what I heard to make sure that I understand? Can you write that down for me? To Harry’s point, can you draw that out for me? You know, what do I need to do next? I think those are very practical questions that can be asked. 

And then I would add, you know, give yourself permission to ask the same question more than once. It’s your care team’s job to make sure that you’re educated and able to make informed decisions. So keep asking questions until you have the clarity you need to make those decisions. Nothing is too simple and nothing is off limits.

Mark (10:49 – 11:06)
But you know, at the same time, I can kind of understand why someone asks for an explanation and it’s offered. And then you feel a little bit embarrassed maybe to say, I didn’t quite get all that and I want to hear that again. But you just have to go ahead and do that because the understanding is more important than the embarrassment I guess.

Sam (11:06 – 11:35)
Yeah, I mean, and I think there’s different expertise in the room, right? The caregiver is the expert in their child. And so as the caregiver, being able to know that and take that to your care team and say, OK, so here’s my expertise and I’m coming to you for your expertise on this care and this treatment that’s being provided. Let’s work together to figure out, you know, what the best plan is to go forward. I think there needs to be this acknowledgement of the different expertise that exists.

Harry (11:35 – 12:47)
Yeah, I mean, perfect. I mean, from a parent’s perspective, a question can sound so simple but be still incredibly important. 

I mean, it can be something as simple as what symptoms do I watch for at home? What do I look for when this happens, right? If I’m giving medicines, when should I call? When should I look for certain side effects? So simple questions can be simple to you, right? And it seems simple to you but are probably bigger important things. 

I think it’s important to feel comfortable with your care team asking the simple questions because the simple questions sometimes make things a little bit easier to process, to understand, to deal with. And so sometimes we think that the small questions are small and don’t ask them, right? I would say, feel comfortable asking any question, right? I tell everybody, you are the advocate for your child, right? And so no question should be uncomfortable when it comes to your child, right? 

And so I’m that parent, I ask any and all the questions, I am that parent (laughter). But it gets to a point where you have to feel comfortable doing that. But again, I think when it comes to your child and you being the caregiver, you should feel comfortable asking any question that comes to your mind.

Mark (12:47 – 13:02)
Sam, are there particular resources like in the community or through social services or the hospital that typically are helpful and available for families who are navigating this journey?

Sam (13:03 – 13:57)
Yeah, many health care organizations have supportive resources for families who need extra help. Asking the care team for a list of what those supportive resources are that are available in your organization is the first step to take. 

But for example, you could ask your care team to connect to you with a social worker or a patient advocate, medical interpreters, child life specialists. Any of these team members can explain information, address language or learning needs, really help with practical concerns, and they can connect you with trusted community resources if they’re needed. 

We have handouts and online resources that can help explain complex concepts, but these really are supplemental resources. Being able to communicate openly with your care team, ask questions, and trust their answers is super important.

Mark (13:57 – 14:16)
That’s really helpful. We live in a time where there is just so much information available to people via the internet and their research. A lot of families choose to do their own research, and it’s hard to know what that value may be.

Harry (14:16 – 14:48)
Absolutely. As a parent, it’s natural to look up things on the internet when you hear new diagnosis, treatment, medications, it’s normal, right? I am that parent that goes straight to the internet and looks up a term that the doctor says, or an acronym, right, that you see on a test result. You go there, what does this mean, right? But I would ask you, a lot of information you do find on the internet is very frightening and doesn’t really always apply to your child. How can families really tell what source is trustworthy?

Sam (14:49 – 16:09)
Yeah, the topic of health literacy in this context becomes so important because as we consider the digital content that’s available at our fingertips today, the internet is just flooded with information that is not necessarily accurate or relevant. So as you look for information online, it’s really important to go directly to the websites of recognized hospitals, health agencies, or even established nonprofit health organizations. Go to the website, check who wrote or reviewed the information, note when it was last updated, and whether it’s supported by research and clinical practice evidence. 

For example, St. Jude Children’s Research Hospital, we’ve produced the Together by St. Jude™ online resource to provide trusted information to anyone facing childhood and adolescent cancer, blood disorders, and other serious health conditions regardless of where the patient actually receives treatment. The website’s available in a growing list of languages and offers comprehensive information, practical resources, and shared stories of hope and healing. The most important thing though, and I know we’ve talked about this throughout our conversation, but it’s talking with your child’s care team before using any type of online information to make decisions about care.

Harry (16:09 – 16:10)
Yeah, that’s very helpful. Thank you so much.