Dr. Chrissy Salley, Director of Clinician Engagement and Outreach at Courageous Parents Network, explores the realities of parent caregivers providing hospital-level care at home—and the urgent need for recognition, respite, and meaningful support.
Jeffrey Snyder, Broadcast Retirement Network
Well, Dr. Salley, it’s so great to see you. Thanks for joining us this morning.
Chrissy Salley PhD., Director of Clinician Engagement and Outreach, Courageous Parents Network
Thanks for having me, Jeff.
Jeffrey Snyder, Broadcast Retirement Network
You know, we’ve been talking on this network and everywhere, I think people are talking about caregiving and the strain and stress that many people are facing as caregivers, and they’re caring for loved ones of all different types and all different stripes. I think this is an interesting topic, because I guess my first question to you is, parents are often overlooked, I would say, when it comes to caregiving. They’re doing caregiving as well, not just the basic necessities for their children, but maybe some that might have some disabilities.
Chrissy Salley PhD., Director of Clinician Engagement and Outreach, Courageous Parents Network
Absolutely. This is a growing population and one that is often overlooked when we talk about nationwide caregivers and their needs. I think a lot of times, what is depicted in those stories and what is depicted in the images that accompany them are adults caring for other adults.
What is missed in that picture or that storyline are parents of infants and beyond who are caring for children with different types of medical complexity. Not only are they often left out of the stories or efforts to improve the lives of caregivers, but you don’t always see them in your communities, because our communities are not set up for them. These families are there, they are working really hard in the home, as you alluded to, and they need a lot of support.
Jeffrey Snyder, Broadcast Retirement Network
I would imagine, I’m not a parent, but being a parent from the outside looking in seems to be very stressful. I know what I was like as a child, and the world certainly shifted. I would imagine that if your child suffers or has some level of disability or needs additional treatment, that strain, that financial strain, that emotional strain, has to increase tenfold, a hundredfold.
Chrissy Salley PhD., Director of Clinician Engagement and Outreach, Courageous Parents Network
It’s a strain across the board. Any part of psychosocial, emotional, behavioral, psychological functioning, financial, as you mentioned, it has all of that. It is an all-consuming thing when you are caring for anyone, but especially your child that has special healthcare needs.
Of course, those needs can range from needing certain therapies, all the way up to needing specialized medical equipment in the home. I know families that are running what is basically a small ICU in their home to support the needs of their children.
Jeffrey Snyder, Broadcast Retirement Network
You mentioned this before, I just want to pick up on that, that maybe some community members, we are a communal society, we all live locally, we have friends and relatives and people in our area, but this may be something that, and I know that a lot of the local governments and state and even federal governments are looking at how to support caregivers. This, I think you said, is really overlooked, that maybe those communities, those groups are not really looking at this particular subset of caregiver.
Chrissy Salley PhD., Director of Clinician Engagement and Outreach, Courageous Parents Network
I think they can be really overlooked and I think that it is also that the needs of families are different than the needs of people that are older, or at older stages of life. If you are imagining a family of a child with medical complexity, they may have other young children in the home, the parents themselves are of working age, they are at a time in their life when they are meant to be working and saving for retirement and these sorts of things, but this caring for their children might be, could be all-consuming. So you have parents, oftentimes one parent will have, if they are in a partnership, one will have to leave the workforce or make serious cutbacks to accommodate the caregiving needs because in-home caregiving, skilled nursing and that sort of thing is still not keeping up with the need of the family.
And you also mentioned communities that are not designed for families of children with medical complexity. They want to take these children with their other children to the park, to the zoo, to Friday night football games, you know, all of these places where they can just enjoy their community and lean in like everyone else. But if you don’t have bathrooms that are equipped to manage the need of a family who needs special spaces for caring for their children, wheelchair ramps still, I mean, it’s 2026, like you can’t even get a wheelchair in everywhere yet, or doorways that are wide enough in every location.
And so these are really simple things that really prevent some families from fully engaging in their community. And a side effect of that, and I think a major problem is it then prevents others from seeing children like these in their community, because we have a huge problem with disability bias, you know, and folks who don’t have a lot of exposure to seeing children, especially with different types of needs and capabilities. And so if we prevent them from entering their communities, because we don’t provide access to those opportunities, we also prevent the general public from being educated and more comfortable.
Jeffrey Snyder, Broadcast Retirement Network
And also, I would imagine a side effect of that with kids not being able to get out for whatever reason, because there’s no ramps and other accommodations, their growth development, and we learn through experiences. If you can’t get into the zoo, for example, I mean, maybe that’s a bad example. But if you can’t go to the movie theater, you can’t go to the local park or whatever, that can really stymie a child’s growth at the time when they need those experiences to grow.
Chrissy Salley PhD., Director of Clinician Engagement and Outreach, Courageous Parents Network
Yeah, I mean, you’re hitting the nail on the head that we all were social people, right? And social exposure helps us develop language, it helps us develop empathy, it helps us feel loved, and just part of something bigger, right? And so when you don’t have those opportunities, and your world is so much more limited, it does limit the exposure to growth experiences, for sure.
And not just that for the child, but also for the family, because they’re at home with their child, right? And so then their lives kind of unfortunately shrink too.
Jeffrey Snyder, Broadcast Retirement Network
Yeah, sorry, I didn’t mean to cut you off. I was gonna, you made me think, when you were talking about the families, and one parent may be having to leave the workforce, I would imagine that as you get older, as a parent, one of the concerns you may have is what happens when I’m gone? And what’s going to happen to your children?
So there’s a lot of thought, I would think that goes into, okay, I’m taking care of my child now. And hopefully, I’ll be able to do that up to some point. And then what happens when I pass on?
Who’s going to take care of the child if they need that level of help? How are we going to support that child?
Chrissy Salley PhD., Director of Clinician Engagement and Outreach, Courageous Parents Network
I think that’s a significant concern. And it’s going to be a growing concern. We have, you know, beautiful, technological, scientific, medical advances that continue to extend the life of all kinds of people with special healthcare needs.
And this is something parents absolutely worry about. And they don’t just worry about the financial piece of it, or the logistical care piece. But they worry about the emotional piece.
Will anybody really know my child? Will anybody love them the way I love them? Right?
These are the things that drive that connection between the parent and child, and are central to all of the caregiving, in addition to all the practical matters. And it’s a great fear for families.
Jeffrey Snyder, Broadcast Retirement Network
You mentioned technology, how has technology, in particular, you know, artificial intelligence is, is probably in every one of our discussions on the network. It’s, it’s based so pervasive, it’s seeped into everything. Has it found its way into caregiving for children?
Obviously, it can’t replace, I don’t think it can replace the human being, but has it found its way into helping children? Go ahead. I’m sorry.
Chrissy Salley PhD., Director of Clinician Engagement and Outreach, Courageous Parents Network
Yeah, I’ll say I think it’s finding its way. I am traveling right now. I’m at a conference where AI is the central theme, the conference that I’m attending at the moment, as it relates to children with medical complexities.
It is finding its way, a lot of people are curious about what it can do, how it can help, how it can add on to what the human can do, maybe not necessarily a replacement. But yeah, caregivers are starting to turn to AI to ask questions about medical care and symptoms, to potentially seek resources and to even explore some sort of emotional reciprocity or, or impact. But we don’t know a lot about how helpful that is, which pieces of AI are most helpful to them.
And what we as researchers, clinicians, and others out in the field can do to produce AI related systems that are most helpful to these families. So lots to be done and to learn about.
Jeffrey Snyder, Broadcast Retirement Network
Oh, yeah. And I think it’s an evolution. Let me ask you for corporations and companies that are developing products and services, what can they do better for this particular group of, I mean, what can they do better for caregiving, but also what can they do better for this particular group of caregivers?
I mean, how can they support them? Because their customers, probably their customers in some ways shape or form.
Chrissy Salley PhD., Director of Clinician Engagement and Outreach, Courageous Parents Network
Yeah. Thank you for asking us this question. I will say one, acknowledge that the human to human connection cannot be replaced by technology.
So to keep in mind that the technology ought to be designed to enhance all the other needs to go to the parents themselves. Don’t start developing a single thing until you’ve sat in a room with parents for many hours and ask them what their lives are like. They have such good ideas.
These people, you have never met a more creative population because they are doing so much with so little. They know what will work. They know what will help.
And the mistake that companies make, that even researchers make is not going to the population first and saying, what are you curious about? If there was a million dollars handed to you, what would you do with it? What could we do with tiny amounts of money that would make incremental change that would just reduce the burden in your life just a bit, right?
Like go to the people that you’re serving. It is a missed opportunity. And I think it’s really a shame when they’re left out of the equation.
Jeffrey Snyder, Broadcast Retirement Network
Yeah. I don’t know if I were designing a product, I’d probably ask the people for whom I was designing the product for about what would make their lives easier, whether it’s a technology, whether it’s, you know, in any, in any field, this seems like better business. And let me close out by asking, you know, caregiving, long-term care, aging, these are big topics for local, state, federal officials.
What should they be thinking about as they look to create a support for caregivers and their loved ones, like in this population as well, parents and too.
Chrissy Salley PhD., Director of Clinician Engagement and Outreach, Courageous Parents Network
Well, again, they should not just listen from what I say, they go to the parents and ask them for what they need. In-home supports are really important. Most families want to keep their children at home.
Some also choose to not, and that is also a good choice, but different families need different kinds of supports. And so, you know, what can be offered in the home? Palliative care is an incredible intervention and support resource that can cover a lot of these needs of families.
They can do care coordination, they can do symptom management, they can teach parents and others that love this child, how to care for them. So that’s a great community-based support that families don’t have enough access to. It’s a real issue, but if we can create access to resources that we know help and work, we could move the needle.
Jeffrey Snyder, Broadcast Retirement Network
And it’s right there. I mean, in today’s environment with all the technology, I mean, it really is there. And let’s face it, America isn’t the only aging country.
It’s not the only one dealing with this. I mean, I’m sure there are others of the 8 billion people on the planet. There’s got to be others around the world that are dealing with this.
Doctor, we’re going to have to leave it there. Thanks so much for writing the piece. Thanks so much for your advocacy and your research.
And we look forward to having you back on the program again very soon.
Chrissy Salley PhD., Director of Clinician Engagement and Outreach, Courageous Parents Network
Thanks so much. Appreciate it.
