What We Carry

Healthcare treats the diagnosis, but what about everything else a family carries alongside it? In this episode, two innovators share their work on the parts of the care experience that clinical medicine often misses.

Dr. Megan Visser, hospital chaplain, sociologist, and postdoctoral research fellow at The Saban Research Institute at CHLA, describes what spiritual care looks like across the spectrum of pediatric illness, from the acute crisis of a terminal diagnosis to the long, quiet grief of learning to live with a chronic condition like diabetes. She shares what surprises her about families' resilience, what parental guilt looks like across conditions and cultures, and why naming grief is often the first step to processing it.

Aashish Mehta, CEO of TacnIQ, describes Backy™, a wearable device that uses tactile sensors to detect high-risk postures and movement patterns in real time, delivering vibrational feedback to the wearer. Currently deployed in hospital settings to support nurses, Backy™ is also being piloted in pregnancy-related back pain support and post-surgical recovery programs.

Episode Resources:

Diabetes Care & Education

SingHealth: Singapore Health Services

Connect with Dr. Megan Visser:

Dr. Megan Visser

Design with Adolescents and Young Adults for Self-Management and Health (DASH) Lab

Children's Hospital Los Angeles: The Saban Research Institute

Connect with Aashish Mehta:

Aashish Mehta LinkedIn

TacnIQ.ai Website

TacnIQ.ai LinkedIn

Backy™ - a wearable developed by TacnIQ

Connect with us:

KidsX Website

KidsX LinkedIn

Children's Hospital L.A. Website

Children's Hospital L.A. Instagram

Children's Hospital L.A. LinkedIn

Transcript

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SPEAKER_02 0:01

Welcome to the Dose of Optimism, where I talk to the optimists in healthcare. My name is Omkar Kulkarni, and I work at one of the world's best children's hospitals where I lead innovation. I started KidsX, which is a premier international startup accelerator for pediatric innovation, and over the years I've met thousands of startups, investors, and innovators. Every one of them has a story, and every one of them is optimistic about the problems they're solving. On this podcast, you'll meet amazing people who will share their stories and what makes them optimistic about the future of healthcare. A little note before you get into this episode. Please talk to your own physician about your health or the health of your children. All right, let's get started. Our first guest today is Ashish Meta. Ashish is in Singapore. He's developed technology for a different industry, not healthcare. But he realized after talking to people at the hospital in Singapore that nurses and staff in healthcare systems could really benefit from the invention that he created. Take a listen.

SPEAKER_00 1:37

We actually have a project right now where we're running for women during pregnancy and back pain. So being able to identify uh core problems that of core movements of postures that cause back pain, but also at the same time, how to mitigate that as well using uh behavioral change, post-back surgery recovery. So being able to actually figure out ways to uh understand a bit more about the type of movements a person is doing after surgery and be able to see how they can restrict the movements so that there won't be any resurgery down the road. So preventing resurgery, uh that's one aspect. And then of course the nurses came about uh a bit later on, where uh I think it was Woodlands General Hospital and also Senkong General Hospital, where the nurses wanted to be able to see how they can actually improve that posture down the road. And we decided to uh work with them due to the two deployments. Uh, but it's all early stages. Uh so far the feedback's been fantastic. The nurses are super excited about it, but there's a lot of feedback in terms of being able to also add a lot more features. So we're gonna look into that now and see how we can help further. What kinds of features are the nurses saying that they're looking for? More behavioral type of vibrational feedback. You know, like um uh right now we you know we we develop very specific high-risk postures, but they're looking for even postures like twisting, left and right, backward movements, backward bending. And so there's a lot of things that I believe nurses are a lot more conscious than a lot of other people. Um so uh this wanna monitor a lot more uh information than any actually any other industry that we know so far, which is exciting for us because uh the awareness is there already. But of course, uh now just want to be able to implement more features so that they can have a deeper dive in terms in terms of how their body actually is moving. Would you see an application perhaps with patients? Yeah, definitely. I think there's been a lot of requests from more like a consumer perspective, like patients with uh back issues. We just not got quite got there yet, mainly because of the um the maturity of the product when it comes to um individual applications on on phones. So we just we there's two things that we uh we're trying to achieve with that. One is have uh a product that's a bit more um consumer friendly. So that's gonna be um a bit on the hardware, but mostly on the phone and the app and being able to reduce any um I guess any teething issues when it comes to usability. So when it comes to consumers, the bar for usability is a lot higher. So we need to get there. The initial stage of B2B is helping us improve that quite a bit, which is nice. Uh we've already started developing apps as well for individuals because um, like the uh particular project that we're doing with uh NUH for pregnant women, essentially with that, it's basically a consumer angle because each individual lady will be actually taking the back key home. So they need to have in a phone app and they need to have a dock to be able to charge it in all these aspects, which uh is a bit different for the the consumer side, which we are learning and and we're getting there. Um so that would be the next stage uh consumer side, but then it might be um chronic side, and also at the same time it we might also look into performance, uh so in the gym or sports. Ashish, thank you so much for joining us. And now a thank you to our generous sponsors.

SPEAKER_02 5:02

Healthcare doesn't need more disconnected AI tools. It needs one clinical AI layer clinicians can trust and that health systems can scale. Nobla brings together ambient documentation, dictation, coding, and workflow support into one seamless experience. Learn more at knobla.com. Our next guest is Megan Visser. Megan is a chaplain at Children's Hospital Los Angeles, and her perspective around grief and guilt, and just the nature by which people, parents particularly, but also adolescents and teenagers in children's hospitals who are navigating everything from a new life-changing diagnosis like diabetes or end-of-life terminal care and conditions that are really difficult to have, that she's realized there's commonalities between those two conversations. And I learned a lot from talking to her about how she's applying her traditional approach to end-of-life care to supporting families that are navigating a different kind of grief and experience when they realize that they've got a new clinical condition that they've got to manage for the rest of their child's life.

SPEAKER_01 6:30

My name's Megan Visser. I am a professional hospital chaplain and as well as a sociologist and right now working as a postdoctoral research fellow at the Saban Research Institute. I do clinical care somewhere else, but I'm so I started out here at CHLA as a chaplain fellow after completing my basic training in chaplaincy and working mostly in the NICU, but also doing research projects related to our pediatric intensive care unit.

SPEAKER_02 7:04

A lot of people imagine that spiritual care in chaplaincy in a hospital setting could be reserved for, you know, really devastating perhaps terminal end-of-life conversations or diagnoses, which I'm imagining you do get involved with quite a bit. But it's more than just that, right?

SPEAKER_01 7:25

Definitely. So it's definitely more than just end-of-life care. And while I would say our profession attracts people who are interested in caring for people who are near the end of life or making decisions about in a trauma or a crisis or related to have, you know, the hope that we would have a good death. And there's certainly that part, that's a huge part of what we do as healthcare chaplains and getting people and families through those crisis moments. And I was lucky enough to do a lot of my training in an acute rehabilitation facility where people had survived the trauma and were going through the process of putting their body, their life back together or together in a new way and coping with either a new diagnosis or different mobility challenge, things like that. And getting to follow those patients for a longer period of time and be able to support them while they're doing that rehab was kind of a key part of how I was trained as a uh to be a chaplain. And this really informed my understanding of where that there's so much more of a continuum of places of where a chaplain could be helpful and helping people understand who they are in relation to their illness or their condition, in relation to their family, and then in relationship to the world and you know, the the world around them, which might include, you know, a God or spirit of their understanding, and figuring out how that all those pieces fit together after receiving a challenging diagnosis or when they're in the process of receiving care and treatment for something that will be with them for the rest of their life.

SPEAKER_02 9:08

And you work with kids too, obviously parents, but also children as well.

SPEAKER_01 9:12

Yes, yeah. And my own work at the bedside has mostly been with parents in our pediatric facility or with adults. Um, but now having been a part of Dr. Raymond, Dr. Jennifer Raymond's lab, it related to the dream study and looking at facilitating peer groups of youth, um, getting to understand how much their experience is connected to their social relationships, to their understanding of the world. Not all youth with diabetes or with chronic illness are going to necessarily be saying or identifying with drawing from religious or spiritual resources. They may have their family and cultural beliefs and activities. Not all of them are going to be identifying with that in words, but they're certainly grappling with what it means to be a teenager with diabetes and figuring out who they are as a person in a world that is not always supportive of them, whether it's their diagnosis or other identities that they hold and experiences that they have. Chaplain C has a place there too. And I think there's a growing recognition that we have way more in our toolkit to support, not only to support the youth and their families, but to support the care team that is trying to figure out how to support youth with limited psychosocial support services available sometimes.

SPEAKER_02 10:37

So as you've started working with youth and adolescence, what surprises you as it relates to the conversations you have?

SPEAKER_01 10:44

The biggest surprise I think I've had has been the amount of resilience and support that they're able to bring together in difficult circumstances and how they've used their spirituality as a way of both getting through the day and then understanding who they are as a family now with grappling with a serious medical condition. One of the things I found in some of my research interviews has been that parents will often know someone else with diabetes. It might not be the same kind of diabetes that their child is being treated for, and know someone else who also passed away. And using that like memory of that person or their experiences of grief and loss to help them, it really informs how they care for their child. And at first I thought, oh my gosh, this must be so much more scary because you think it will go in a particular way, which was resulted in someone's death. And that might be a really challenging memory to hold while caring for your child and wanting to make have them have the best life possible with a new diagnosis. But and ended up being something that a few families have shared with me so far in my study. That memory of that person is something that they use to positively inspire their child. Like, whip you're having trouble with your diabetes or feeling down. Why don't you think of grandpa and like know that he's watching over you and he dealt with some of the same things? Like using that memory in a positive way. That's something that definitely surprised me. And it was so genius, just a genius way of taking something that was so hard in that family's that they already survived and they got through and they hold as a memory and a and hold that grief with them and use it as a resource to in supporting their family emotionally and spiritually. It's just pretty cool.

SPEAKER_02 12:36

Let's talk more about grief. So whether it's in the context of of somebody with a new diagnosis that they're going to have to live with their whole life, or with a parent who may have a child who's got a terminal illness that they've just learned about, in your work, how do you think about either past grief or just the grief that they're experiencing now as it relates to their future? The child of the parent who's just been told they've got diabetes, they're to a certain degree grieving in a different way because their their life has changed. And so there, there's some elements of kind of grief in the traditional sense that you could apply here because now there's this element of a realization that they've lost something. They've lost perhaps the life they previously had. They've got a new one. And I imagine you've got to navigate that a little bit. Similar to, of course, the parent who's been told their child um, you know, has a terrible terminal illness. And that that's an obviously different form of grief. But curious if there's similarities between the two or things that, you know, as a chaplain, you can bring from the knowledge of how you help a family dealing with end-of-life grief, and how you can use some of those same tools with families that are dealing with a new condition.

SPEAKER_01 13:51

It's a great question. I think, you know, the first step is of course, is creating that conversational space for that conversation, which is definitely an access issue we're facing now and and uh and that it happens in out in outpatient settings. There's a perceived barrier to being able to call the chaplain, or you might not think, or you also I think clinicians, we often feel like it has to be all of us, or we have to do it all ourselves. So there's that piece first that I think is important that I think having how you're going to create that conversational space with a family to be able to discuss grief. But I think once you're able to do that, being able to name, kind of center the person's life narrative and figure out with them like what are those emotional and spiritual needs that are happening. And if grief is one of them, being able to name that has, I think, tremendous power of just them realizing that they are grieving something can unlock new coping resources because most often those families have dealt with some form of grief before and gotten through it and have skip skills and support systems to rely on when it comes to grief. Maybe that's a religious or spiritual community, maybe that's a family member, maybe that's a cultural tradition. But being able to just have a space where they can name that with their care team can be incredibly powerful. I it would be hard to sum up the different ways that it shows up because I think it really is so personal and different for everyone. But I do think there's a difference between the grief about like right now, everything is going to change and they're digesting so much information in the case of diabetes through like diabetes education, being such a big piece of that diagnosis experience. And then there's the grief that happens later that might feel a little more ambiguous or hard to pin down. And that's where I think ongoing support for caregivers for parents is a really big piece of that we need more of to be able to have create that space for them later to be able to name some of that. And then there's the anticipatory, I think, grief. I know that at some point this illness may get more difficult, or my child may face other barriers to um having the activity levels they wanted to live, having being able to manage their diabetes to do the things that they really want to do, that there might be other hurdles and sort of pre-grieving those challenges or those things not lining up with what they imagined. And then, of course, there's the fear of loss. So there's some anticipatory grief of like that there might be, or I guess it would be more like preparational grief of like, I need to prepare myself for the fact that I could lose my child if their diabetes was uh due to this illness. Uh, and with so much management being on the child and their family.

SPEAKER_02 16:49

But I feel like this doesn't happen all the time, right? Whether it's anticipatory grief or just navigating the process of there's changes in your life. And I feel like the services you provide could, if we had a way to get them available to everybody, there'd be so much more benefit.

SPEAKER_01 17:04

Oh, I completely agree. I think that's where why I'm so attractive. I mean, I'm a sociologist, but it's it's I'm also just in general attracted to research and innovation because I want to be able to figure out ways we can do that. As much as I would love to have a chaplain available all the time, not only in the outpatient clinic when the when people have their visits or are there for a day of testing and visits or education sessions, but like to be available on call for them. I love that if that were possible. But there also has to be some other ways to be able to connect with families to these resources or be able to help them connect to themselves and name some of these feelings. And I think that's where uh technology could be our friend. I think there's ways of that there's I hope that there's products and programs that I can be a part of designing that would help families be able to do some of that.

SPEAKER_02 17:55

Sure. Now we're in a very diverse couple of lots of different cultures, lots of different beliefs and religions. Do you see that on a daily basis? Do you feel that that there's the you know, spirituality and kind of everything that you do? Do you feel that, particularly in the diversity that we have here?

SPEAKER_01 18:13

I certainly feel that in terms of my, you know, my own and the people I see. I'm a Unitarian Universalist. We're a really small religious group. So I've only seen one or two families who are Unitarian Universalists in the hospital, though I I, you know, would be happy to see more. So I think really starting with where families are and also knowing in a pediatric setting that the child's view of um, you know, how they might name spirituality or the divine or not is going to be often completely different from how their parents are, and it's gonna be different than their extended family as well.

SPEAKER_02 18:47

So you can navigate that. That's really interesting. There could be a 10-year-old who's got a very different view or thought around their own spirituality versus that of mom or dad.

SPEAKER_01 18:57

I mean, I think not shortchanging, that not focusing just on the parents, like knowing that the uh conversation with a child's about how they see the world or how they understand themselves can be explored through things like art and music and things that they enjoy to be able to name those sources of spiritual support and also areas of spiritual struggle, that they're gonna do that in their own language and their own way. And that's that's something beautiful about being working with with children and not just with adults. But there's also something I know that parents, um, you know, who are, you know, I have a young child, parents who are my age, who have their own parents who have specified, maybe religious or or spiritual beliefs, and they're having to navigate that while also relying on and needing more support from their extended family. And sometimes that's negotiating different beliefs within one family system and being able to help again. I I said the word naming before. Part of it is naming that noticing what's going on, um, if it's playing out in front of you, which, but often it's not. Often it's when they go home. But asking people, what would it be like to share with your mom who's living with you and your child, um, some of the feelings you're having about this diagnosis? I've had parents share with me that they've had a relative who wants to feel that if they pray more, that maybe the diabetes, for instance, would go away. And I've spoken to parents who acknowledge their own parents' belief, but who know that continuing that conversation and advocating for their child's needs and wanting to do all the things that the care team suggests, but also maintain their relationship across generations and those support is um is can be a source of spiritual struggle for those parents of children with diabetes, but also a source of empowerment because they're able to really use the knowledge they've built from receiving care for their child at CHLA and then be able to share with their parent all the things that they've learned? I'm not saying that, you know, like any uh parent relationship.

SPEAKER_02 21:09

Do parents ever feel guilty that perhaps something they did, the food they provide, even though clinically, you know, we know that that's not the case, do parents ever feel like kind of guilt around how they may have contributed from a whole host of scenarios to their kids' diagnosis?

SPEAKER_01 21:27

There's so many rooms across conditions, across diseases, across floors that I've been in where families have named, well, if I'd only done this or not done this, that I wouldn't have caused this and now it's irreversible. And just this. And even if they're like, I know you're gonna tell me it's not my fault, but I still have this lingering feeling. And I think sometimes help our job as chaplains is to help people understand where those feelings are coming from and also to release and to help them release themselves from from that guilt or for or even if we can't change their belief about what they think is ha may have precipitated this diagnosis, that helping them find forgiveness for themselves as a parent in general. Cause I can definitely now I know from my own experience that like having to practice some like self-acceptance, self-forgiveness is a daily has to be a daily routine as a parent. And it's really, really challenging because there's both our hearts living outside our body and we like they they are separate from us. They're their own being. And I think the education that we're able to provide now for parents about the causes of illness, sharing with them what we know and what we're learning about about diabetes is um critical to them understanding that they really could not have caused this. But sitting with them in those feelings, I said sort of when we started, is I think sometimes it's grief and the guilt underneath the guilt, feelings of guilt and wanting it to be different than it was. And sometimes that means we wish we could have had control over it and we can't.

SPEAKER_02 23:07

Megan, thank you so much for joining us today and talking about all sorts of topics from spiritual care to chaplaincy to grief and guilt. And ultimately, I think the reality that there's only so much that we can do. These kids that we have are their own beings, and we try our best, and sometimes there's more than we can control. All right, thank you for joining us for your dose of optimism. Make sure to check out our show notes to get more information about our guests and the work they're doing. Visit our podcast page on the Kids X website to join our podcast community and to learn more about pediatric innovation. Thank you to our sponsors and to our presenting partner, Kids X. Please subscribe wherever you get your podcasts, and remember, it takes a village to make sure our kids grow into healthy adults. So volunteer at your local library, help out at the community center, and if you're so inspired, donate to your local children's hospital. Alright, see you next time. The content, views, opinions, and information presented on this podcast do not reflect the views at Children's Hospital Los Angeles or of the sponsors of the podcast.