Geography professor Elizabeth Olson discusses the challenges that youth caregivers face in the United States and around the world, and how their situations may be more exacerbated by the COVID-19 pandemic.
Jonathan Weiler: Welcome to another episode of “COVID Conversations” from the University of North Carolina at Chapel Hill. I’m Jonathan Weiler. I’m a professor of Global Studies at UNC-Chapel Hill.
Matthew Andrews: And I’m Matthew Andrews. I am in the Department of History at UNC-Chapel Hill.
JW: So Matt, you uh, the last time we recorded, you were on your way out of town for a camping trip, which I know you were really looking forward to and I’m interested to hear how that went.
MA: Well, I did a Memorial Day camping trip down to Huntington State Park in South Carolina. I read what all the experts said and they said that camping was socially distant approved behavior. Going to the beach seemed to be okay, as long as you were able to keep six feet apart from people, which was fine. So all of that was was great. But I was really, really struck by the fact that as soon as we got out of Chapel Hill and really into South Carolina and into the beach towns of South Carolina, I went to a couple gas stations and had to go to a grocery store, and I walk into a Food Lion wearing my mask, which I’ve been doing everywhere I go in Chapel Hill. And there are dozens, scores of people in there. And literally I am the only person wearing a mask. The only one – and I’m talking the three days I was there, I did not see a single person wearing a mask and it takes kind of takes me back to our discussion with Marc about how different people are reacting to this pandemic in different ways. And there are the group of people out there who are following the guidelines of the CDC. I’m not necessarily saying one is right or one is wrong, although, come on wearing a mask is right, right now. But there are a lot of people out there who are following guidelines and a lot of people who are not. Maybe I shouldn’t have been surprised, but I was surprised.
JW: I’m surprised that it was so uniform. Like if you had come back and said a surprising number, I don’t know, half were not wearing masks, that I would have expected. But not to have seen any mask-wearing — I find that on unnerving.
MA: We’re doing this podcast on Thursday, May 28th and the University is going to be rolling out the details of its policy moving forward, you know, and that is clearly going to be rule number one, it sounds like: everyone wears a mask at all times, when on campus.
JW: So that aside though, you still enjoyed your camping trip?
MA: Yeah, it was still very, very fun. And I feel healthy. Thank you for asking.[musical interlude]
JW: Today, we spoke with Professor Betsy Olson, a professor of Geography and Global Studies at UNC Chapel Hill, and she’s also the Chair of the Department of Geography. And one of her areas of expertise is on youth caregivers, and that’s what we talked to her about today.
MA: And Jonathan, the category of youth caregivers is just, was just a category I was not familiar with. I mean, it made sense to me as soon as someone said, oh, we’re going to be talking about young caregivers, but I had never thought of this group. And especially, I had never thought about, you know, what this group was undergoing at this particular moment.
JW: Yeah. And the fact that there are millions of young people in this country ages 8 to 18, who are in some significant way, taking care of a parent, taking care of a grandparent, taking care of a younger sibling because of household circumstances. It — the scope of that group was just much greater than that I understood.
MA: And what I you know, what I found particularly interesting at the end of our conversation, is the way she compared this moment to natural disasters, like a hurricane.
JW: Right, and all the ways that family life is completely disrupted after those kinds of events.
MA: Absolutely. And so here is our conversation with Betsy Olson.[musical interlude]
MA: Well, thank you so much for joining us, Betsy.
Elizabeth (Betsy) Olson: Yeah, of course. Thank you for having me.
JW: So, Betsy, your research, the research we’re going to be talking about today is focused on youth caregivers. And of course, we’re going to talk about youth caregivers in the time of COVID. But could you start by telling us just how we define who youth caregivers are? And roughly how many there are in the United States?
EO: Yeah, of course. So we don’t actually know the number of youth caregivers right now in the United States. The only national survey that we’ve had was conducted or published in 2005. And that estimated 1.3 to 1.6 million caregiving youth. We, and most experts actually anticipate that the number is six to nine times that and it seems that — we’ve been looking at some data from Florida that we’re hoping to publish quite soon and that seems to ring true to the data that we’re seeing. So there are a lot of young people who are providing care for their families in this country. That number seems to be growing and we’re really trying to get a handle on that number. In order to do that we’ve just got to conduct the research. We use a couple of different phrases when we’re talking about this category of young people. In Europe and other countries, it’s more common to use the language of “young carers.” In the United States, we’ve tended to use “youth caregivers” or “caregiving youth.” And these are young people, generally between the ages of about 8 and 18, although we also talk about young adult caregivers as falling within this category, and they are responsible for caregiving within their families. So they might be assisting someone who has a chronic medical condition, a disability, health conditions that emerged because of aging and that can include health conditions such as mental health, substance abuse, and so on. So, like any other family caregiver, these young people are responsible for supporting their families in a range of different ways. That could be through direct supports, they might, for example, help them get out of bed in the morning, get dressed, or they might be doing more indirect type of assistance, such as taking care of a younger sibling, if the person that they’re supporting is a parent. So there’s lots of different kinds of caregiving youth and there’s lots of different types of caregiving that they’re in involved with. And so you know, we always talk about it as quite a diverse category, but we try to create the category in part to try and make them visible.
MA: Betsy I’m just curious, when you say you create this category, I’m interested in the gendered aspect of this — are we really talking about girls usually? I mean, when you break it down, is it girls and young women who are usually these caregivers more than boys and young men?
EO: Yeah, I’m gonna [sic] preface my answer, Matt, by just clarifying that there is very little research, especially in the United States, on this category of young people. But given what we know about from research in other countries, particularly the United Kingdom, which has produced a lot of research on young carers, we know that both young men and young women are caregiving. Sometimes the duties will be quite gendered. So we might see more young women caregiving for females or we might see more young women caregiving if that care requires taking care of a sibling or something like that. But we also see changes over life course. So as a caregiver ages or as tasks become perhaps more physical, things like lifting, we might see more young men involved. So it’s pretty much both young men and young women, even though we know that the caregiving population more broadly, tends to be feminized, tends to be more women than men, with caregiving youth, we don’t have enough information or data to say necessarily, you know, that there is more young women than young men doing caregiving, but we do know that their caregiving can be pretty different.
JW: Well, just a quick interjection, one fictional character that I can think of from the show Friday Night Lights, which is a great show and has a, portrays the quarterback Matt Saracen, one of the stars of the show, as a youth caregiver for his grandmother because his parents are basically gone and she’s in cognitive decline. And it’s an important theme of the show how he’s trying to balance all of his responsibilities at home, taking care of her, making sure she gets her medicine, feeding her etc., while going to school playing quarterback, etc.
EO: Yeah, you know, one of the fascinating things about doing this research is how quickly some people make an association either from their own life, or from, you know, a dear friend that they had growing up, or a fictional character. So there’s actually a lot of fictional characters, also in juvenile literature, that are young carers, youth caregivers, and that example from Friday Night Lights is a really good one because we also suspect that there’s more and more caregiving youth who are providing care for aging adults. We know this because of a lot of demographic changes. We also know it because of pressures on families. Whether it be from very specific cases like the opioid crisis, where more and more grandparents are having to step in to parent the children of their own children who’ve fallen prey to that crisis. Yeah, and just the aging of our population more generally, and trends toward older adults moving into their adult children’s homes. We oftentimes don’t think about the kinds of interactions that happen as aging adults or grandparents who are raising grandchildren, you know what happens when they get older. Generally, the grandchildren want to continue that caregiving relationship and they might take on more and more responsibilities as a result.
MA: Well, first of all, I did not think that there would be a Friday Night Lights reference in our discussion-
EO: That was really very impressive. [laughter]
MA: -today, so I enjoyed that. And second of all, I maybe this is backing up a little bit and perhaps I should have asked this first, I’m really curious how you particularly got interested in this topic, Betsy. Could you just share a little bit about how this became the focus of your academic research?
EO: Sure. I mean, a little bit of it as serendipity. So I had been, I’ve done a lot of research on geographies of religion. I’m a geographer and my expertise is in care ethics, which probably explains quite a lot about my interest, but also in childhood and youth geography. So a lot of my work is with young people. And I was living in Scotland, I was at the University of Edinburgh, and had begun a project on youth spirituality and religiosity in areas of urban economic deprivation. So basically kids growing up in poor places and trying to understand some of the dynamics of their lives as it related to religious affiliation and religious practice. And through that research, strangely enough, I began working very closely with a group of young carers. And from that experience, you know, my eyes were really opened to something that, you know, was also in my own family — my cousin took care of my grandmother. You know, my family on that side is Mexican-American and so, this is an experience that we have. I know that her experience was very different than mine was with my grandmother. I remember, you know, this vibrant, amazing, energetic woman and for my cousin, it was a very different experience because she had already been in decline, and so I think on the one hand, it sort of resonated with that experience. And on the other hand, when I came back to the United States, moved back to the United States and accepted a position at UNC, I started reaching out to try and find the groups that supported young carers in North Carolina. I wanted to keep working with these young people. And it gradually dawned on me that people didn’t even know what I was talking about. So I was contacting all the family caregiving agencies, all the aging agencies, and saying who, you know, who works with the young people who are caregivers and I would get blank looks. I started reaching out to the schools and had a similar kind of experience. And so I think whenever you’ve worked very closely with a category of young people who might be considered vulnerable in certain respects, but also have a tremendous amount of strength and knowledge and dedication to their families and empathy — all these amazing things that caregiving youth develop as a consequence of their experience. And then you realize that that category just doesn’t exist, that it’s quite impenetrable for all the folks who are supposed to be working with and supporting young people. I felt the need to try and develop a research agenda here in the US.
JW: So Betsy, one of the phrases that comes up in the literature on youth caregiving that you shared with us, is this coming aging tsunami, I think is the phrase that gets used-
EO: The silver tsunami.
JW: -silver tsunami. And so I guess I’m interested in hearing what you have to say about this long-term crisis in caring for older Americans, and how the pandemic is exacerbating those sorts of trends, and if you could just talk about that a little bit and then maybe help us think about how youth caregivers fit this kind of larger picture and crisis.
EO: Yeah, course. So I’m actually curious, Jonathan or Matt, if either of you have ever had experience of requiring something like respite care for a loved one or have someone close to you who’s required respite care? What are some of the common things that you confront when you’re thinking about who can care for someone else that you love, a family member?
MA: What exactly do you mean by respite care? Let me just make sure I understand here.
EO: Sure. So let’s say you have to leave for the day. And you have someone who requires care pretty much all the time. What kinds of things might you have to go through in order to find someone who can take care of them?
MA: Yeah, well, I have parents who are pretty young, parents in their low 70s still, they were very young when they had me. I luckily have not had to do this at home. And I’ve spent time with loved ones in hospitals where you don’t have to think about anything. You know, you just sort of be there and people do do everything for you. So I can’t respond to that. I mean, I can’t even imagine all of the things you would have to do about how you keep them safe on a second-by-second basis, about how you’re sure whether they’re going to take their medicine, whether they’re going to eat, what’s going to happen if someone knocks on the door. I mean, the sort of anxieties must be endless.
EO: Yeah. And not only the anxieties, but think about all of those pieces of caregiving that you just described. And that’s like thinking, you know, hypothetically, what would I have to make sure is taken care of. And if we think about the aging, you know, the aging population that we have in the United States, for instance, that is only one population that requires this kind of investment of care. So we have an aging demographic in the United States, you know, this big bubble that’s coming — “the silver tsunami,” as it’s called, but really, we also don’t want to typify aging adults, all in the same way. So your parents are healthy and they’re doing well. You can imagine, you know, all of us can appoint where there’s going to be more support needed. And that point, you have to really get invested in making decisions, how does that care get delivered. And at that point, you’re probably also hoping that there’s a lot of resources for you in order to support that, whether that be financial resources, or whether it be human resources. And we see strands on all sides of that. So, in terms of the human resources, you know, you need people who can go into the home and do all the things that you just described, especially if you’re working a job and you can’t be the full time caregiver. So, you know, it’s not an incredibly lucrative job to go in and work in someone’s home. You might make a little bit of a higher salary if you have some skills that would allow you to also do some form of medical procedure. You know, the very basic things of dressing a wound or, you know, providing slightly higher levels of care in terms of medical needs, but you’re probably not paid very well. If you’re a caregiver and you’re going into a home and you’re keeping company, you’re keeping people safe, you’re ensuring that they can eat, you’re helping them move from room to room, and so on. And so you know, the big crisis really with our caregiving crisis is one of devaluation of caregiving jobs in the United States. And so because they’re so poorly paid, we don’t have a lot of people wanting to go into these professions. Or they might really want to, but not be able to do it, or they might really want to, but have to take on two jobs in order to be a domestic caregiver. So on the one hand, this crisis that we already have is a function of these, you know, really kind of damaging structures of how we value work in the United States and caregiving is very devalued form of work. And then we have rising pressures because of the aging of our population. So we can look across different states and what we’re beginning to see is a greater and greater challenge for caregivers of all types, to try and find people who could come into their home, to help give them respite, to let them step away and go grocery shopping, for example. To let them go do something for themselves to go for a walk with a friend. So in terms of formal structures of care, these kind of waged labor caregiving, that’s becoming increasingly scarce. And then on top of it, even though care work is devalued, it’s still very expensive. So it costs a lot to bring someone into your home to take care of your loved one. You know, for some people, that’s not even an option. Maybe culturally, you feel uncomfortable with the idea of someone taking care of your grandma. Maybe you feel exposed by having someone come into your household. So now if we think about this with a young person, you know, a 14-year-old who is in that same position. Maybe taking care of Grandma, being taken care of also by Grandma. Scared about going to school, really scared about what they’re going to find when they come home. Not having a chance to step away with friends, and so on. We can begin to see how the crisis of care builds up. It’s an economic crisis. It’s a social and cultural crisis. We want our loved ones to be taken care of. And at the same time, we often do not have the means or mechanisms to do so because our country is not set up for that. And so despite a lot of work and effort on the part of policies, some policymakers, we are still falling far short of a plan that will allow us to adequately care for our aging adults in the next 20 years. So you throw on top of this, the pandemic. And all of a sudden we’re hit with a range of complexity of crises that a lot of researchers are still trying to work out. So we know for instance, that for people who rely on having respite care for even just a short period of time to be able to go do shopping, to take a little break, that that has been removed, largely. And so finding respite care, being able to step away, take a break, the stress of going grocery shopping, the challenges of maintaining your regular medical appointments, just standard medical treatment, which is, you know, a weekly and sometimes, you know, more than weekly experience for caregivers and their families. Everything is more difficult.
JW: And Betsy, I would imagine in addition that, with all of the challenges of thinking about how can I best care for my loved one and can I afford economically or just in terms of time and ability, to keep caring for them in the home. On top of that, now, the thought of farming them out, if you will, deciding that it’s time to move them to a congregate care facility now is kind of a nightmare to contemplate because the mortality rates are so high in many of those facilities. So the sense of there being no option and no escape would seem to be intensified and in the worst ways possible, by the nature of the current crisis.
MA: Even added to that, Jonathan, just the idea of asking someone to come into your home, I mean, we’re being told over and over that we need to social distance — don’t let anyone into your home. And now you’re bringing someone who may be just taking care of your loved one, but may be taking care of three people, one person who might be sick.
MA: Is having a caregiver in the best interest of the person who needs care in your home? It just sounds like a minefield that people are trying to navigate.
EO: Yeah. And there’s, you know that — you all point to exactly the problems and these conundrums that caregivers are facing right now. And then we have to layer on to that, the fact that caregivers are susceptible to certain kinds of risks themselves. So you know, risks of depression, risks of high anxiety and stress, you know, and these can catapult in all kinds of directions. And so, we do know that caregivers are experiencing a tremendous amount of stress at this time. You know that most of the really quick surveys that are taking place by caregiving organizations are suggesting this across the board for whatever the type of care is required.
JW: And then I would imagine on top of that too, Betsy, and you can create correct me if my supposition is wrong, but households in which this kind of caregiving is taking place, where the household can’t necessarily afford to put their loved one in a well-resourced facility or have good, high quality care in the home, are also being disproportionately affected economically by the current crisis, which would only add to the stress and anxiety and limit their options for however it is they’ve been trying to take care of their loved ones.
EO: Absolutely. I mean, one of the interesting things about doing work on caregiving more generally, is the surprise that people experience when they get to the stage where they need support for their caregiving. You know, so either an injury in a family, development of a chronic illness, aging and so on. And it’s not there. I think people go through life thinking: when it gets to that point, there’s all of these services — I mean, that’s what you know, that’s what all these taxes that I pay, certainly they go towards some of that. What they find, as soon as you start venturing into this, are a range of rules and regulations which limit your options to begin with. And then just severe underfunding of supports for families. And so, you know, for aging adults, for example, as the caregivers go and began to explore what types of supports might be available to them, they’ll find very quickly that it’s quite minimal compared to what they thought their needs were, and that they might be put on a waiting list. They could be waiting for a very long time to even get those few resources that are available. And the folks who work in this, you know, they worry about that and they try to figure out solutions and so on, but, you know, when your budget is limited, you do the best that you can. For low income families, this is a whole other situation. And we’ve started trying to understand how the pandemic and social distancing is impacting some of the caregiving youth families that we work with in Florida, doing that primarily through services that support them. And, you know, as we might expect, these families are in a way, I think, a maybe an illustration of what a lot of our more insecure families are experiencing at this moment with some added pressures. So your question about, you know, economic and security, what happens if you’re already an insecure family in terms of your economic resources? Let’s say you are you know, I know you have a great show on the gig economy that I just heard, and gig workers. And let’s say you’re an Uber driver and all of a sudden, you have absolutely no work. You know, those workers are already not saving, they don’t have a reserve. They don’t have anything to draw upon. And so suddenly you’re facing simultaneously food insecurity, you can’t pay your rent, you are getting all kinds of pressures, if you’re a parent, to make sure that your kid has the resourcing that they need to stay in school because you’re worried if you don’t do that someone’s going to come and knock on your door and ask you why your kid is not in school. You know, why are they not dialing in? Why are they not getting on the internet and joining their teachers? And you may have made $11 in one day, and this is your week. So you know the way that social distancing and COVID-19 has impacted these families financially has been absolutely devastating.[musical interlude]
MA: You’re listening to “COVID Conversations”. Jonathan and I are speaking with Betsy Olson about youth caregivers in the time of COVID. And now back to the show.[musical interlude]
MA: Betsy, you mentioned down in Florida services that support youth caregivers. I mean, can you talk a little bit about what types of support systems and support services are out there?
EO: Yeah, there’s not that many Matt. I work with an organization called the American Association of Caregiving Youth, which is a national organization that has an intervention program in the West Palm Beach County area and that’s called the Caregiving Youth Project. And they do a lot of work to try and support caregiving youth families, working in collaboration with the schools. And so the types of support that they give or provide range from things like getting around a table once a week with the students and just allowing them to talk about things and develop certain life skills that they might need at a younger age than other kids who are not caregivers. So things like basic financial knowledge. You know, some of these young people might be having to take on more financial obligations, either through work or through just managing their family’s money, through to how do you manage stress? How do you take account of your own wellbeing? A lot of caregiving youth are quite bad at kind of recognizing their own limits. They’re very concerned about the people that they care for, love them very much, and oftentimes will sacrifice themselves in order to make sure that their loved one is doing okay. And then they also do things like you know, if a family needs a wheelchair ramp, you know, if the caregiving youth is having to lift a sibling, you know constantly and it you know, a wheelchair ramp can sort of change things for them. They give them cooking classes. They have a camp that allows them to get away for a weekend and they provide all the respite care to make sure that their families are going to be well cared for and that they don’t have to worry while they’re away at the camp. They go bowling. For a lot of these kids, you know, they don’t have a lot of opportunities to step away and it requires a lot of work in order to facilitate that. So these, these things can be really important to them.
JW: Betsy, in one of the articles you sent us, you noted that the, in the United Kingdom, the support for youth caregivers, state support was better. That there was more robust policy and support in that segment of the population. Can you talk a little bit, give us a couple of examples of what are some of some of the elements of that policy and what would a good policy look like the United States?
EO: Yeah, so in countries where they’ve made larger, quicker strides in recognizing and then trying to meet the needs of caregiving youth and their families, we see a bunch of different kinds of approaches. In the UK, young people are actually considered to have rights as caregivers, not just as young people, but as caregiving, young people. And these rights include things like not facing unnecessary barriers to their education. And so it’s expected that if kids are going to school and if they’re a caregiver, and if their caregiving somehow impacts their education — we know that caregiving youth are more likely to be bullied or become bullies themselves, they might kind of act out at school because they have no other outlet for acting out. Just really want to play and relax and what they’re supposed to be doing is sitting at a desk and paying attention. Or they might be very tired if they’ve been up all night. So you know, one really good example is that every school has to have someone you know, who’s basically a contact for the young carers and needs to be educated and they need plans in place for serving the needs of these young carers. There’s a lot of resourcing. So they hire people for geographic regions that are specifically tasked with keeping track of and ensuring that there are services for young cares. They get things like free bus passes. You know, it’s a really important a lot of these families are financially insecure. And so you know that that type of support is essential for them. But really recognizing them as caregivers is the distinguishing characteristic between some of these other countries in Europe and the United States, because a caregiver in the United States must be over the age of 18 according to all of our caregiving policy. If you’re under 18, and you do the same work as someone who’s over 18, you still can’t fall within that category. You can’t receive any of the supports. And so, even just recognizing that that group is a caregiving group, you know, that alone would change things quite a bit. It’s what a lot of us push for saying, “Well, you know, kids are caregivers too.”
MA: Betsy, you think about caregiving in this COVID moment — I’m trying to think how to ask this as a question and I’m not sure I can do it in my head. So maybe it’ll just be a statement that you can respond to. And I don’t mean to sound inhumane when I when I say this, but there’s a (…) I’m imagining being a 14-year-old caregiver and as much as I like to think otherwise — when I was 14 years old, I was very much being taken care of, you know, rather than the other way around. But there’s an irony here in this COVID moment, it seems to me that youth caregivers are uniquely engineered in some ways, biologically engineered to be caregivers at this particular moment, because of their general resiliency to COVID. So that’s my statement. [laughter] I’m wondering if you could respond to it.
EO: Well, I’m gonna [sic] back you away from the biological argument. But yeah, I mean, I get your point. It’s like, are these kids somehow better capacitated and what could we learn from them?
MA: There we go. That’s the question I meant to ask, Betsy.
EO: Yeah, yeah. So what what could we learn from them? But I love the question because, you know, one of the things that we do always emphasize, first of all, is that caregiving youth are also cared for. Even when they’re providing care, the people who they provide care for often really care for them, and sometimes they’re supporting them in all kinds of ways. So there might be more mutual support. But it’s absolutely true. You know, a lot of these young people are very interested in caregiving professions. Later on in life, they end up going into caregiving, whether that be in areas of medicine or whether it be through domestic caregiving and so on. They get a lot of it, they know what to do. You know, they’re quite well informed. That does depend on the type of caregiving that they’re provided. So, you know, for for some kids in this moment, what we’re beginning to understand is that being able to be home has both its pressures and its benefits. If you have to care-give for someone, and when you go off to school in the morning, you know, you, you’re trying to pay attention to your work, you’re excited to be with your friends and so on. And yet, every once in a while, you might be worrying — if it was a bad morning, you might be worrying about what you’re going to find when you get home. Will someone have fallen? Will that person be okay? Did I give the right medicine or was I not paying attention? You know, all of these concerns that then, once you get home, you can resolve those concerns. So for some caregiving youth, we were hearing reports that it’s a little bit easier for them. I think a lot of caregivers right now can probably understand that. Your caregiving task is a little bit easier in the sense that it becomes just integrated into your day. Now, what might not be easier is studying or getting online for your class. And so we’re starting to hear also reports that, you know, the biggest struggle the kids are having, having to be at home and still providing care, is this educational gap, which again, we know is probably going to show up across different socioeconomic, demographic indicators. So kids who are having a harder time getting online and so on are going to struggle. But with caregiving youth, there might be that additional struggle, which is that, you know, now rather than being away for your school, you’re always at home, and you’re always available for your caregiving duties. And so you might be called upon more frequently, or you might be volunteering, you might really want to do that work. And so, you know, we’re expecting to see some impacts on kind of educational attainment.
MA: Betsy, just very quickly, where I was going with that biological statement — so I don’t sound like a total wacko here — is that I was imagining people taking care of someone who has COVID. And the idea that an elderly caregiver is going to be much more susceptible, you know, to the virus and is going to exhibit traits where someone who’s — it’s not as if 14, 15 and 16 year olds are impervious to the virus, but it seems to me that they’re sort of uniquely situated to be caregivers at that particular time. That’s, that’s what I meant by that.
EO: Yeah, I mean, it’s something that we haven’t quite seen play out on the ground yet, because — in part, because of the population of young people who receive services in this particular program, you know, they’ve been pretty darn socially isolated. So, you know, if your parent has lost a job because they’re a farm worker, and you’re already quite poor, and you don’t have your own transportation, you’re really not going anywhere, especially if then food is being delivered to you, because you’ve also moved into a stage of food insecurity. And so, in a way, these families have also been able to very effectively isolate. And so we’re not seeing, so far, thank goodness, COVID showing up as an illness in a lot of these families. Nonetheless, you know, some of these young people have already had to confront the idea of or confront the reality of taking a loved one to an emergency room or a medical center. So, you know, the other part of being a caregiving youth is that you’re sort of accustomed to emergency, medical emergency. So, you know, if your mother who’s had a traumatic brain injury falls out of bed, you have to take her to the emergency room regardless of COVID. And so, you know, there’s these additional layered concerns of how do we sustain standard medical care? And there’s a lot of anxiety, you know, around that, both with this population, but with the other population. I think that it’s interesting to think about this perception of risk because I have heard from some of the folks supporting the caregiving youth that they’re not too worried about the virus themselves. And you know, I think that that might be a characteristic of their age, just kind of, you know, like, “well, even if I get it, I’m probably going to be okay.”
MA: Jonathan, or Betsy, I’m wondering, you know, we were talking about youth caregivers and Betsy, you expanded it to sort of the category of young adult caregivers. I’m guessing there’s no data about this. But I’m wondering if either of you have have anecdotes about students who, this semester have had to go home and become caregivers. I mean, is this something that you’re seeing in your classrooms with any of your students?
EO: Yeah. I – you know, we have a lot of young people who have caregiving responsibilities at UNC who are students. [background noise] My dog’s dreaming right now (…)
MA: I can hear that — I know that sound!
EO: Do you hear him? [laughter]
MA: That’s a doggie nightmare. [laughter] Yeah.
EO: I know, I have two dogs asleep in here, but one just started to-
JW: Well I’m not sure [laughter] I’m not sure how good of a question it was anyways (…)
EO: [laughter] No, it’s a great question, I mean we have — yeah, and he would agree if he were awake. But we do — we have a lot of students who are caregivers at UNC. And, you know, one of our hopes is that at some point, we can better understand their needs as well. So, you know, I’ve had students who scheduled their classes for Tuesday and Thursday, not because they want to have Monday, Wednesday, Friday free, but because they’re traveling home to some other town in North Carolina, to help their other parent care for a chronically ill or disabled parent. So they leave on Thursday night, they, you know, stay there, provide that assistance, and then they come back first thing on Tuesday morning. We’ve also had students whose parents have moved here with them when they’ve been coming for their education. And you know, there is a lot of work to be done still in that area of even young people. We might hear more broadly in the news, they’ve been paying a lot of attention to millennial caregivers, because they’re the you know — sometimes this is presented as the perfect synergy. Millennial caregivers caregiving for their aging, adult grandparents, for example. Both might be, you know, financially insecure on their own but financially stable together. And the idea being that the young person can support the old person and in some circumstances, this works really well. But it does raise questions for what will happen coming out of this pandemic when you have one group, one population that if they, you know, they’re more likely to not present symptoms with the virus, and they could very easily be bringing it home with them to a vulnerable individual. These are a lot of questions that will have to be confronted as schools go back into session, and I wonder how we’ll deal with that. I think it’s gonna [sic] be you know, it’s not just a problem of, you know, parents going back to work and will they be able to see their aging parents? But for for some of these people, you’re a direct caregiver as a child or as a young adult, for someone who’s vulnerable, that’s just not easily understood by most people. It’s not, you know, it’s not even on their radar. You know, one of my favorite stories is when I was talking with a person who I ended up collaborating on some work with in North Carolina, and she’s been in schools for ages. And she said to me, “You know, Betsy, you’re telling me about a population that I didn’t know existed. Like, you tell me that I have to worry about kids in my school, who are asthmatic, you know, okay, that’s a category. I know how to deal with that. You tell me that there’s kids in my school whose parents are incarcerated. I know that category. I know what we need to do for that. But you’re coming to me and you’re telling me there’s this whole category of kids that has exceptional experiences that we aren’t even thinking about.” And so you know, when schools go back into session, there is some urgency that, you know, I suppose my expectations are pretty low, in trying to help families communicate if their young person is also a caregiver for someone who’s vulnerable in the home and what the consequences are for that.
MA: Yeah. So Betsy, I’m wondering, you know, we’ve been talking about some of the chief challenges facing youth caregivers in a general sense before COVID. What are the unique challenges that you’re hearing about or you’re seeing through your research facing youth caregivers during this particular pandemic?
EO: You know, I think an interesting thing is, again, how this population might echo other challenges that caregivers are facing more generally, it’s just a lot harder when you’re a kid and you’re facing these challenges. So I’ll begin by saying that — if you’re a kid, and you’re facing these challenges, it’s you know, even more pressing. So certainly financial insecurities — a lot of caregiving families in our country for all those reasons that I discussed earlier: caregiving is expensive, it takes people out of the workforce it, you know, it does all kinds of things to your household economy. A lot of those families have found themselves in just an extreme case of precarity, food insecurity, challenges paying rent, lost work, and so on. Some of the young people themselves need to work to support their families and so they also have not been able to do that. I think that educational impacts will come out as being a really strong concern and especially for a lot of kids who are caregivers you know, within immigrant families. They are truly dedicated to trying to get the best education for their children and right now they may not have internet or WiFi and they really have no capacity to get it into their home. In some circumstances, you know, you might have a family with six kids, they have one computer that’s been allocated to them for use by the household. And so how all those kids are supposed to complete their schoolwork you know is a really big question. Some families, we know that the caregivers are waiting for, you know, an individual who’s out trying to get work, to come home so they can do their schoolwork on the phone, because the WiFi hotspot that was supposedly supposed to be provided for them is not provided. So there’s just you know, a lot of those kinds of things that we’re seeing. So long term financial instability that’s kind of layered onto this really acute crisis. And I think there’s also been changes over time. So when when the social distancing first came into place, a lot of families were trying to figure out, you know, how are we going to get food when public transportation is inaccessible to us? That might be because they couldn’t risk infection or because it simply stopped running. There were problems with medications. And so you know, if you were used to going to your local clinic, which was specifically for low income, or immigrant families and meeting those needs, perhaps even had someone who speaks in your language at the clinic, those might have either closed down or really limited their services. And so, having access to medication — we know that now, a lot of these families may not have, you know, enough medication to last through more than a week. So they just don’t have a backup supply and basic communication. So, you know, part of the challenge for the services that support these young people is just trying to stay in communication with them, and being really concerned about whether or not the young people are able to reach out to them. That might be, again, because in poor families, they just aren’t as connected as other families are. They just don’t have the resources in their household to do that. But also because, you know, if you’re a low income family, you might be trying to have a conversation about your stresses of caregiving, with the care recipient in the room and any number of siblings or anything else. So privacy and the lack of privacy has been a challenge for those young people who just don’t have a personal space. They might try to go outside to have a conversation or, you know, reach out some other way. But for the most part, you know, I think — like so many people we know that young people are suffering in a different way from social isolation. We know that young people are are showing these heightened signs of depression from social isolation. And you know, I think we’re waiting to see, how has this impacted the caregiving youth once we we sort of get into a place where we can begin to have those conversations with them.
MA: Are there other flashpoint moments that have had a profound effect on the culture of caregiving? Or you know, the culture of youth caregivers? I mean, I know know you’re interested in the history of caregiving. I’m thinking like — I can’t imagine that the AIDS epidemic, for an example, at least in the United States, had a profound effect. I mean, I’m sure it did like in Africa for example, where were so many children became orphaned because of AIDS. I’m just wondering if there are other moments out there that are even comparable that can help you or us understand, you know, the effect on caregivers that we see happening in this pandemic.
EO: Yeah, I mean, in terms of the pandemic and parallels, I think the best parallels are probably things like hurricanes, you know, extreme environmental crises. In fact, I even recall an interview from NPR after Hurricane Katrina, with a grandmother who was raising her grandchildren. And what became evident during the interview is that the grandmother was in a wheelchair. And she was doing her best to care for these young children and they were obviously also very important for her, and they were in a shelter that was inadequate and so on. And so that capacity to care mutually for each other totally fell apart. With several hurricanes that they’ve had in Florida, you know, when you have these extreme environmental events, they’re always so challenging for a family that is — that requires extraordinary caregiving. And so, you know, this is parallel in lots of ways. It’s just been that acute moments is very similar. And so, you know, I certainly hope that by understanding these impacts, we might also be able to better respond to these other kinds of acute moments. In terms of history, I think that probably the most striking thing will be the opioid crisis. I think that this is going to be the moment where we really see the impacts upon young carers. Substance abuse is still you know — young children of people with substance abuse are considered young carers if they’re having to be involved in taking care of siblings, cleaning the house, doing the kinds of things that children of substance abusers have to take on. And, you know, obviously those are areas where neglect and even familial violence can be a grave concern. And so, you know, what we’re seeing from the opioid crisis is certainly, I think such an extreme demographic change. And we’ll be learning a lot about that, you know, as a consequence of how this kind of family restructuring, where you’re almost removing an entire middle segment of the population from some communities and as parents and so on, you know what happens.[musical interlude]
JW: Betsy, thank you so much for joining us today.
EO: Yeah. Thank you so much for the conversation. I really appreciate it.
MA: Thank you, Betsy.
JW: This has been another episode of “COVID Conversations”. We want to thank the College of Arts and Sciences and Dean Terry Rhodes, the Dean of the College, as well as Senior Associate Dean Rudi Colloredo-Mansfeld, who’s brainchild “COVID Conversations” was. We want to thank Kristen Chavez and Geneva Collins in the communications office in the College of Arts and Sciences, and our production team, Matthew Belskie and especially Klaus Mayr, without whom you would never hear from us. If you like the podcast, please spread the word about it. Please like it, rate it, share it, and subscribe. You can find it on our landing page at covidconversations.unc.edu or wherever else you may find your podcasts and we will talk to you next time.
Transcript edited by Kelsey Eaker