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“A Story Council takes time. It is a donation of presence to one another. The experience of being heard does not come from direct response or advice; it arises from the pure act of having one's story received and held in the center. Someone speaks of a hidden joy or a terrible burden he or she has been carrying, and as the person lays it down, it is as though the heart of the group - residing in candlelight, residing in a vase of flowers, residing on the placards of their intention statement - receives it respectfully and does not interfere with the speaker's journey toward insight. The circle provides a kind of alchemy - to transmute sorry, to highlight joy, to open empathy where there had been enmity.” ~ The Circle Way, Chapter 7
The Hidden and Here Mini-Series aims to use storytelling to highlight and educate clinicians on the impact that the COVID-19 pandemic has had on caregivers, non-physician essential workers and teachers who we believe have been hidden but very much here. In each episode, we will highlight their stories and a panel comprised of Sheila Lahijani, MD, Ryan Matlow, PhD, Sonoo Thadaney Israni, and Ranak Trivedi, PhD will reflect on the stories heard, discuss salient points and identify action steps that can be put in practice.
In this episode, we hear how and why these specific groups were chosen and the importance of storytelling in medical education.
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Ruth Adewuya, MD: Hello, you're listening to Stanford Medcast, Stanford CMEs podcast, where we bring you insights from the world's leading physicians and scientists. If you're new here, consider subscribing to listen to more free episodes coming your way. I am your host, Dr Ruth Adewuya.
This episode is part one of a new mini-series called Hidden and Here. Presented in collaboration with Stanford Presence, a Stanford medicine center, and the Stanford Department of Psychiatry. I am joined today by Sonoo Thadaney Israni from the Stanford Presence Center and our Faculty from the Stanford Department of Psychiatry, doctors Sheila Lahijani, Ryan Matlow, and Ranak Trivedi. I'll have them introduce themselves briefly, starting with Sonoo.
Sonoo Thadaney Israni, MBA: Thank you, Ruth. Hello everyone. It's a joy and pleasure to join all of you today. My name as Ruth mentioned is, Sonoo Thadaney Israni. I spent 25 years working in high-tech before I came to Stanford about a dozen years ago. And for the last dozen years, I've worked with our faculty and leadership to create new degree programs, new centers, new initiatives. And today I have the joy and pleasure of being the executive director of a center called Presence, where our Faculty Director and Founder is Dr Abraham Verghese and our center focuses on balancing high-tech and high-touch and health care and a whole lot more. I'd like to point out that a lot of the work we do at Presence and I've done in my life start with the fact that I am the daughter of refugees, and I myself am an immigrant to this country as an international student. And it has shaped so much of the focus that we have on equity and inclusion and the work we do.
RA: Thank you, Sonoo. Sheila?
Sheila Lahijani, MD: Thank you, Ruth. I'm Sheila Lahijani. I'm a dually trained physician in both internal medicine and psychiatry. I've done sub-specialty training in the field of consultation, liaison, psychiatry. I primarily work as a psychiatrist for patients with medical illness, specifically cancer. I currently serve as the medical director of the Stanford Cancer Center Psychosocial Oncology Program.
Ryan Matlow, PhD: Thank you, Ruth. It's a pleasure to be here today. I'm Ryan Matlow. I'm a child psychologist at the Department of Psychiatry and Behavioral Sciences. My work in general focuses on addressing child adversity and traumatic stress. And in these efforts my work emphasizes mental health support and trauma informed care and community in school settings. And particularly with groups and populations that have been historically under-resourced and marginalized.
RA: Great. Thanks for being here, Ryan. Ranak?
Ranak Trivedi, PhD: Thank you, Ruth. It is such a delight to be here. I'm Ranak Trivedi. I'm in the Department of Psychiatry and Behavioral Sciences, as well as with the Department of Veterans Affairs in Palo Alto. I'm trained as a clinical health psychologist and a health services researcher. I've been interested in understanding and improving the role of informal caregivers in all levels of chronic and serious illness care. On the personal side I grew up in India and moved here over 2 decades ago to pursue my graduate work and I have both personal and professional interest in the questions that we're going to be talking about. Both later today, as well as in a special podcast dedicated to this.
RA: Thank you all for chatting with me today. And I'm really excited to discuss this new series called Hidden and Here. I thought a great place for us to start would be to understand how this series came to life. So Sonoo, the idea for this series came through the work of a COVID working group convened by the Presence Center. Can you tell us a little bit more about how this series came to life?
SI: Sure, Ruth. So, as I mentioned earlier, Presence is a center at Stanford and our focus has always been since we began on the humans in the world of health care. We prioritize and recognize that the patient is of course human and the people surrounding them are human, like the caregivers you heard Ranak talking about. And on the clinician side, the physician and everybody who supports that physician team are also human. To focus and ensure that we don't forget the humans in the system and thus the human experience in medicine is really important. So as part of the cruelty of COVID as it rolled out in this past 9, 10 months or so, our center brought together our colleagues from psychiatry and behavioral sciences that we've worked with on different projects before. And we started a working group to look at who are the other humans that are hidden, but very, very, very much here as COVID has played out in our lives in these last 9, 10 months.
The impact of COVID on patients, especially patients who lack privilege of one kind or another is being documented and talked about. But then there is this other pieces of people in the K-12 school world, people in the caregiving world, people like the garage attendant. Their stories, their lives, and how they have been impacted by COVID is equally important and very hidden today. So the group of us had a talking about how to make sure that we took those stories and honored and respected them in terms of listening to them and learning from them, and also making sure that the medium through which we capture all this is shared such that they can hear them.
RA: Sonoo, I thank you and your group for convening and even being so thoughtful to think about this hidden heroes that have not been recognized, or we may not be paying attention to. I'm curious though, out of all the different formats that one could use to relay this information, why and how did you decide on the podcast format?
SI: That's a great question. And we as a team spent a fair bit of time thinking and talking about this before we arrived at a podcast, and we arrived at it for the following reason. We are looking and wanting to capture the stories of people that we are calling Hidden and Here. And these are people who will not have access to an academic paper or a webinar, but they will have access to a podcast. And as we honor and listen to their stories and learn from their stories, we wanted to make sure that these stories were available to them to hear as well.
RA: I would like for you to elaborate on how this mini-series and bringing these stories to life relates to the work of the Presence Center?
SI: As I've said earlier, I think that Presence champions the human experience in medicine. So our goal has always been to foster research, dialogue, and multidisciplinary collaboration like this one to produce measurable and meaningful change in health care.
RA: We are using storytelling to bring the stories to life. Medical education isn't normally what comes to mind. So Sheila, I'm curious, why did the group decide to utilize stories to share your insights on this topic?
SL: Well, Ruth, there is so much power in telling stories and listening to them, because that's how we connect as people. In medicine we listen to people's stories to understand their concerns, to formulate diagnoses, and develop treatment plans. Studies also suggest that storytelling can relieve stress and suffering. So in thinking about our specific populations in this series, their voices are very important. We wanted to create a platform for them to be heard and perhaps feel a greater sense of belonging.
SI: I'd like to add a quote that comes to my mind as I heard Sheila speak actually. Oliver Wendell Holmes, Sr once said, “It is the province of knowledge to speak. And it is the privilege of wisdom to listen.” There's a very valuable function in listening and being.
RM: Just from the perspective of a trauma psychologist, we know that addressing adversity and trauma in a large part involves our narratives. Indeed, the best practices in trauma treatment involve narrative work. Then we know that traumatic stress and risk for retraumatization, both at the individual level and within our systems corresponds with incomplete, fractured, disjointed, and oftentimes avoidant narratives about people's experiences.
And in this case, many times stories are hidden. They're incomplete and they're disjointed, as I said. And so really in this work there's a need to accurately and sensitively attend to the stories and experiences of individuals and communities who are experiencing significant adversity as it's taking place with this current pandemic. We know that growth and healing really starts with being seen, heard, and understood. And so that is what we're aiming to promote to achieve in this conversation with the series.
RA: In each episode in this mini-series we will be focusing on a specific hidden and here population that is of particular interest to each of our faculty. So I'd like them to just tell us briefly, which of the hidden heroes will be highlighted in your stories? Let's start with Ryan and then go to Ranak, then Sheila.
RM: I'll start just a little bit of background as it relates to, well, my focus will be on the educational system. We all know that COVID has had a devastating impact on education systems, really forcing a re-imagining or even a revolution of how schools operate. And there have been incredible challenges, in particular in developing and maintaining connections with students. And we know this is especially true in under-resourced communities that experienced significant barriers to academic engagement, particularly in the context of the current pandemic. We hear a lot, in our school-based work we hear a lot about the challenges and pitfalls that students are facing, yet we're also finding folks who are persevering, who are getting creative and are finding new ways to grow. And so really want to highlight those stories and identify the heroes in this experience. So we'll hear from students, we'll hear from educators and we'll hear from health professionals who are finding ways to navigate this world of COVID and distance learning within the educational system.
RA: Any personal insight or personal interest in the topic that you have selected?
RM: I think a lot of my interest comes in just the beauty of youth and just the true pleasure that I take in working with kids. I am clinging to my own youth. I think working with kids keeps us all young. And so I enjoy living and working in existing settings where kids are also existing, where youth are existing.
SI: Ryan's being very modest and not sharing with us that he has spent much of his life focused on children on the border, and the price they pay, and the lack of privilege they have. And he has been both a scholar as well as an activist in highlighting, showcasing, researching, and advocating to address essentially our immoral functioning as a society in terms of those children at the border.
RM: Thanks, Sonoo, I appreciate that. And maybe it makes sense for me to comment a little bit on what brings me to that work. I grew up in a community that was largely made up of immigrant farm workers, a largely kind of agricultural migrant community. And I went to a bilingual elementary school and I had the privilege of coming from a family that was established, more middle-class. But I saw my friends around me who were struggling with many of the adversities and stresses that are particularly impacting immigrant communities. And so that's part of what brings to me here is bringing some of the resources and privileges that I've been able to access and really doing right by my childhood friends.
RA: Well, Ryan, I'm thankful that you're here and that you're bringing that lens to the stories that you will be highlighting in the episode to come.
RT: I want to share a quote from former first lady and caregiver champion, Rosalynn Carter. And it's a quotation that drives so much of the work we're doing these days. “There are only four kinds of people in the world. Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."
Even before COVID hit the US in the way we've now become really familiar with, about 50 million Americans were providing unpaid care to children and adults who had chronic or serious health conditions. These were both mental health conditions, as well as medical conditions. This number is most certainly gone up, not just because of the COVID-related caregiving, but we have seen studies showing that people who already had chronic conditions were less likely to seek timely care and therefore had worse outcomes or greater exacerbations.
So we've seen that in heart disease, we've seen that some in kidney disease and other such places. So the role and the burden of caregiving has only gone up since the pandemic has hit. So we're focusing on caregivers in the episode we're doing to really sort of share the experiences as well as to hopefully let caregivers know that they're not isolated and they're not alone in this experience, which is a big reason why we want to do this series in the first place.
RA: And Ranak, any personal interest around this topic for you?
RT: It's not a coincidence that I am in this field. Both my parents have chronic conditions. My father was diagnosed with heart disease when he was in his 40s and he's now in his mid-70s. And we've as a family have experienced the ups and downs of really severe heart conditions, bypass surgery, all kinds of different complications. My mom has been a stalwart caregiver and she's had metastatic breast cancer for the past 15 years, it'll be almost 16 years. So both of them were diagnosed and both of them went through really complicated treatment in my first year of graduate school, actually, back to back semesters. And so at some level we've all kind of chipped in in the caregiving thing. They're both doing great, they're independent and they don't need assistance from us in the same way as we see in a lot of cases. But the long-distance caregiving is something that's always on my mind and see what I can do.
There's a cultural aspect to it that I think is often overlooked. So I, as I mentioned, grew up in India and the Indian culture is more collective as where the expectation is the families provide intergenerational care and other people in the community chip in, which is not how typically the caregiver policies and health care system is set up. And now I have a 6-year-old. So although it's not health-related caregiving in the same way, I certainly am feeling what Ryan has mentioned in terms of the education challenges and other complications that the COVID has brought, even on the normal caregiving that we see of parents taking care of children or guardians or grandparents taking on that role.
RA: Right, thank you so much for bringing to light this aspect. And it sounds like just personally in a scholarly way, your insights around this topic will be very beneficial to us and to our community as well. And so we'll go to Sheila to talk about which population will be highlighted in her stories?
SL: I'm really honored and privileged to be here among this group of friends and colleagues. I'm particularly interested in and focusing in on the group that are identified to be essential workers, and yet are those workers who are not clinical per se. As both an inpatient and outpatient doctor I worked side by side with many people every day, including these workers. And I've seen over the course of my career not only how important their work is, but also how they interact with us and support us as clinicians, take care of our patients and their families. I know this to be true as a doctor. And I also know this to be true as a family member.
My mother underwent 18 months of cancer care for leukemia. And more recently my father had a massive heart attack this past year during COVID. The people who are nonclinical and essential, all of those people who would park our cars, check my parents into either the clinic or the hospital, those who would come in and serve their meals or clean their rooms. These individuals enriched my parents' experiences. Particularly thinking about my mom who had multiple hospitalizations over the course of her leukemia illness. These were really vulnerable times, if not the most vulnerable times in our lives and my parents for sure. And these individuals were there for them. They were there for them then, and they're there for our patients every single day, especially now when others can't be there during the COVID-19 pandemic. And I see this when I'm working in the hospital, but I also hear this every day from my patients when I see them at their clinic appointments.
RA: Thank you for sharing all of that. And I'm looking forward to this episodes and the community listening should be looking forward to the episodes where we highlight the stories. But one thing that I'd like to call out just in this conversation is that each of you have actually brought forth your own hidden and here stories where we're learning from you and hearing parts and sides of you and your history and your background that you show up with every day, the work that you do that no one might be aware of. So I would say this group first alone is a first set of maybe hidden and here heroes, but we look forward to the stories that you will be highlighting in the other episodes.
RT: I was going to add that in psychology we often say research is me-search, and a lot of us wind up studying the things that affect us the most. And I think this gathering highlights that really well.
SI: As I'm listening to what my colleagues over here, speaking, I'm actually reminded of a comment or a speech that came out of Eric Topol's book, where he was writing about artificial intelligence. But I think it applies here, because what he wrote was, “That if you've ever experienced deep pain, you know how lonely and isolating it can really be, and you feel anguish and a sense of despair. And that one can be comforted by a loved one, a friend or relative and that helps, but it's hard to beat the boosts from a doctor or clinician that you trust, who can bolster your confidence that it will pass. That they will be with you no matter what, that you will be okay.” And he ended by saying, “That that's the human caring we desperately seek,” and ended with saying, “that he hoped artificial intelligence can help restore that.” I would argue or paraphrase that to say, maybe COVID in all its cruelty can get us to see the importance of caring and comfort and listening.
RA: I am pausing Sonoo, because I need to take that in, I think. Such timely words to reflect on. Thank you for sharing that.
RM: That's a big statement to comment, to digest and take in. I think it does warrant a moment. It is incredible to see the way that this adversity is bringing us together, just to have this conversation be unfolding in a way that it is as a way of kind of hearing our stories, sharing experiences that I hope was the aim for our storytelling. But I think is emerging organically, really excited to kind of continue this dialogue and conversation as we focus on the individuals and communities that we'll be turning our attention to in the episodes that come.
RA: I don't know if you can feel all of the emotions in all of the care and all of the thoughtfulness that is going your way around this topic. While I have this esteem group with me, and I know we have a lot to look forward in the forward episodes, I maybe wanted to dive into a little bit more of their areas of interest and to learn a little bit from them in this episode. And so I'll start with Ryan and asking you about the conversations about COVID in schools. We know that there is an ongoing debate with regards to the effectiveness of school closures on virus transmission. And I know that we can talk about at nauseam, but I'm curious to get your thoughts on how you think school closures has been affecting or will affect poor children in the US?
RM: Yeah, this is definitely something that will be highlighted, and is I think a story that is best told by the folks that are living and experiencing the changes directly. And so obviously we'll elaborate on this in my forthcoming episode. But clearly there are concerns about the impact on academic performance and progress, and just general learning, particularly in underserved, under resourced communities there are incredible barriers to education, access and engagement. Just to name some examples, many children, many students simply do not have access to optimal learning environments and their incredible disparities in the spaces where kids are now operating and doing their best to learn. Busy homes that are in crisis in so many ways, for a number of reasons. We know that many kids and families are experiencing significant financial stress, job loss due to COVID, food and housing insecurity.
Unfortunately many of these factors also correspond with increased rates of COVID transmission, COVID infection. Simultaneously school closures and distance learning has resulted in decreased access to the wonderful resources that schools traditionally have provided. There's a little bit of a concern around this kind of double whammy of having increased stress, increased adversity, coupled with reduced access to traditional resources, or really trying to find new ways to access those resources. And what we see is that really the students that are most in need are also the students that are hardest to reach in so many ways. And so there's a lot of concern about a widening achievement gap, a widening health gap, a widening of disparities in general wellbeing, as a result both of the pandemic and the specific ways in which the pandemic has affected schools and educational systems due to school closures and due to distance learning.
RT: I'm struck, Ryan, when you were talking, the overlap that I hadn't really thought about on the group that you are highlighting, the students, and the group that I'm trying to highlight, their caregivers. One of the challenges of distance learning and not coming to college is that they are having to take on or resumed caregiving responsibilities that they were getting a reprieve from by being on campus. So we know that while we often think about caregivers as something that happens in older age, sometimes the dementia caregiving comes to mind, if anything comes to mind at all.
Turns out about one in four caregivers are actually youth caregivers and that's between the ages of 18 to 25. And actually there's growing research showing the caregiving that starts even before that, younger kids, 10, 11, 12-year-olds. But in the college segment, what was happening is when people went off to college, when their kids went off to college, they were then able to focus on their educational piece. But now with college campuses being closed, even at Stanford now, having us taking a step back, is they're having to juggle those responsibilities all over again, even as they're trying to perform at a high level at an elite institution.
RA: Ranak, that's a great segue into my question for you, which was, what do we know right now about the impact of COVID-19 on the mental health of our caregivers and whether they're youth caregivers or otherwise?
RT: One of the most distressing statistics I saw for caregiver wellbeing is there was a survey that they did and they just happened to ask, “Are you a caregiver?” And so they were able to kind of glean some data specific to people who said yes to that question. And what people reported is that in the prior 30 days, from the time they responded to the survey, that they had experienced an uptick in a mental health crisis, including an uptick in suicidal ideation, and a serious consideration of death by suicide, which is really distressing to think about. But it's not all bad either. And I think it's important for us to reflect on that because the bad stuff is happening, and Sonoo said it beautifully about the cruelty of COVID.
But there have been some silver linings. And one of them is that for people who are providing care, they find it's sometimes easier to provide care because they don't have to commute to work. They don't have to rush out the door, and they're able to sort of stay in the moment or provide care as needed through the day, rather than plan to provide all the care in the morning, go to their day work, come back and kind of pick up. I've heard from parents who've had children during COVID, or just have young children, how much they're enjoying the extra time they are getting with their children. So there are ways in which people have found silver lining. But I think overall there has been an overlay of stress and strain because of COVID on this group.
RA: My question then goes to Sheila. And my question to you has to do with the fact that we know that scientific data indicates that black Americans and Latinx communities have been impacted by COVID-19 at a higher rate. And in fact, I spoke at a prior episode with Dr Mahoney specifically about the social determinants of health as it relates to COVID. But then in preparing for this, overlaying this with the data that shows that people of color make 80% of our essential workers as well on medical campuses and this group that you are highlighting. I'm curious just to get your thoughts and insights about those 2 datasets in relation to the work that you're doing, or the stories that you will be highlighting?
SL: I really appreciate you bringing those points up, Ruth. And I just want to process it by saying a couple of things as well. So I'm a first-generation immigrant, and having grown up in this country I think I've been really astutely aware of what separates me from other people, being married also to a first-generation immigrant from another ethnic background. Having been a caregiver, continuing to be a caregiver. I think about this all the time. And the point that you just made in terms of what's been going on with this pandemic and those studies essentially it set health disparities ablaze.
We know that the majority of nonclinical essential workers are disproportionately people of color and also identify as women. These individuals risk exposure to COVID-19 every single day in their roles as essential workers, while also caring for their own families and communities. They're more vulnerable to economic downturns than those of us who provide direct patient care. And yet these individuals may not be able to access the health care that we clinicians and other clinical workers can access. And there are studies that suggest that these essential workers also have a greater risk for emotional distress and even mental health disorders.
So I can't emphasize the importance of these points. And you know, when I think about the word pandemic, I think about the fact that its Greek roots mean all people. So I think we all carry this responsibility to our peers, our family members, the patients we care for, the folks whom we're studying and researching. I mean, we are all part of the human race, and so I think these are important considerations for us to have. And this is why I think it's so important for me also to focus on this group as part of the series.
RA: Ranak, so we will be hearing from you in the next episode. Care to share any teasers at this point?
RT: Yes, I'm very excited. We are going to be talking with one of our own, a physician who's at Stanford, I won't share who, whose experiences both uniquely shed light on the caregiving experience as well as will be something I think we can all relate to as well. So stay tuned for that. And also we're going to use that interview to also spotlight the challenges and the uplift that caregivers are experiencing during this time. And in talking with my other colleagues who are on this episode, we will be able to share some strategies and resources that listeners can use in their work and their lives.
RA: Great. Looking forward to it, Ranak, thank you for sharing that. Thanks for tuning in. This podcast was brought to you by Stanford CME. To claim CME for listening to this episode, click on the claim CME button below, or visit medcast.stanford.edu. Check back for new episodes by subscribing to Stanford Medcast wherever you listen to podcasts.
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Ruth Adewuya, MD
Managing Director, CME
Stanford University School of Medicine
Nothing to disclose
Sheila Chitsaz Lahijani, MD
Stanford Health Care
Faculty Nothing to disclose
Ryan B Matlow, PhD
Sonoo Thadaney Israni, MBA
Executive Director, Presence and Program in Bedside Medicine
Ranak B Trivedi, PhD
Assistant Professor of Psychiatry and Behavioral Sciences, Public Mental Health and Population Sciences
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