Direct Service Providers (DSP) Perspective

Image displays a colorful brain with the phrase Neurodiversity Health Chats.

Interview with Bobby Verdugo LCSW

Bobby Verdugo is a Licensed Clinical Social worker at the UC-LEND Clinic. Listen in as we discuss the complexities of widespread vaccine hesitancy. Bobby addresses key points of vaccine hesitancy including mental health, uncertainty in the effectiveness of the vaccine and institutional mistrust. 

Thank you so much, welcome, Bobby.

It’s great to have you here.

It’s great to be here, thank you.

It’s good to see you here.

Good to see you again and and great that you guys are engaging

in this very important and timely project.

Thanks. So, Bobby, what do you think as an LCSW

that some of the pos…

or some possible reasons for vaccine hesitancy in different communities?

You know, that’s a really good question, because that’s something that I think

right now we’re really currently struggling with

is the vaccination rates, obviously not only just in California, L.A.

County, but across the country.

You know, we have the solution.

We know that vaccines are effective

and there’s been a lot of research and a lot of kind of information

that has been kind of disseminated to various communities.

But we see that still a lot of communities are struggling

and being disproportionately affected by this kind of delta

variant research specifically communities of color.

And so I guess the question becomes,

why is there a hesitancy there?

You know, I think the answer is complex,

but I would say that in certain communities of color, one element might be

is that there might be kind of a history

and ongoing history of trauma resulting

from various systems that communities are interacting with, right?

Whether it be kind of medical systems that have not been really accessible

or have not really provided comprehensive or adequate care.

You know, not being able to connect with health insurance are, you know,

not not having the ability to connect with consistent financial opportunities.

And then, of course, all that ties into with educational opportunities, right?

So if you have limited college

limited ability or education in high school or science,

all of these things can potentially contribute towards your,

you know, maybe hesitancy towards towards vaccines.

But specifically, I think in marginalized communities,

they felt they felt very victimized and maybe in some ways

traumatized historically by a lot of policy.

And I think, you know, as we’re trying to roll these vaccines out,

that it makes sense that a lot of communities are hesitant,

that a lot of communities are really worried that, you know

, it’s something, you know, you know, are these vaccines safe?

We’ve been lied to before.

We’ve been let down before by various systems.

If we get sick, do we have health access?

Can we go to the doctor, right?

Some communities don’t have access to the doctor to.

So to then get a vaccine that potentially has some side effects

and you might get somewhat sick, even though it’s a low probability.

But there are stories.

And and I think for a lot of patients that don’t have the education,

they don’t have the science background, it’s difficult to integrate all of that.

And I think it creates anxiety and fear.

And again, a lot of patients

who and communities who are in marginalized communities.

You know, there is high levels of, you know, trauma and adversity and fear

in those communities that I think with these transitions

and public health policies that have been so rapid and so quick,

I think it’s been hard for communities to to kind of, you know.

Get on board with the vaccine,

but then there’s communities, for example, that are also not,

you know, they may not be marginalized.

We see a lot of communities, let’s say, you know, let’s Orange County,

where know there’s restaurants or there’s

community centers that are saying, we welcome those that are unvaccinated

because I think the vaccines

have become such a political or politicized, unfortunately thing.

And I think in this country, we really struggle with implementing

kind of community and public health and social work measures.

They’re seen as government trying to kind of get in our way of our

independence or government dictating what we should put in our bodies, right?

And I think as Americans, we all hold on to this and embrace

this idea of of this individualism, right?

That is can lead to so many positive

things and creativity, but can also be so detrimental

when we’re needing to roll out these kind of more community based programs.

And you have people that are really resistant

to any government imposing anything on them.

So I think in both its anxiety, it’s fear, it’s the politicization,

its previous trauma that all kind of boils down to that.

The response to that answer as to why people are hesitant.

And I think also, you know, because it’s new, I think people,

we are the primary emotion of the of the brain is fear.

And I think with vaccines, there’s been a lot of fear

because it’s happened so quickly with a lot of the other vaccines.

Historically, they’ve taken years to rollout, and there’s been decades

of now of experience that we’ve had with rubella and mumps and flu vaccines.

But this vaccine is somewhat new,

and I think there’s now with Instagram and social media.

There’s been a lot of people sharing their stories

about how they’ve

really felt sick or something that people have had adverse reactions.

And I think again, people don’t have the science background and understanding

to recognize, well, that’s just one person out of 3 million.

And so it’s hard for people to kind of do have a sense of that.

I think public health has a really major problem.

We’ve always had this problem in terms of how do we disseminate policy

into the community and specifically vaccines.

Because even before this was all the vaccine

hesitancy about autism like vaccines cause autism.

And that’s another element, right?

That to put into the equation that these vaccines will they impact my

unborn baby? Will they cause risk for neurodevelopmental disabilities?

You know, all science currently shows that it’s safe, but honestly,

we haven’t had a ten year study on these vaccines, right? So

I think there’s a certain level of anxiety there that is warranted.

Absolutely, Bobbie, you touched on so many different levels

of where vaccine hesitancy is coming from

and how COVID 19 really wasn’t president, and we had no idea how.

Everything was going to look days, months, years from now,

we know mental health was impacted due to COVID 19 in many ways.

In what ways do you think that has played a role with people’s vaccine hesitancy?

Mental health. Yes. Yes.

Well, I think it’s it’s similar in nature to other kind of health care

maintenance, right?

Like, for example, we all have to go to the doctor.

We all have to eat

healthy diet and exercise and lead healthy lifestyles.

And even pre-pandemic,

I think this was something very difficult that we were seeing in marginalized

or under-resourced communities, right? Because.

You know, in this communities, as we’re saying, there’s high levels of disruption.

There’s high levels of trauma.

There’s also just a lacking of resources and education

and cultural norms, maybe in the communities.

So as a result, it’s really hard for people to engage

in healthy lifestyles, right?

And especially if you’re depressed, as we know that certain communities

have experienced again traumas and adversities

that predispose them to mental health issues that mental health

like depression will play a major

role in how you interface with the medical system. Right.

And we know that depression,

if you’re depressed, are less likely to fall off of medications,

you’re less likely to follow your doctor’s recommendations.

And I would say that the vaccine falls under that right.

So if you’re depressed, you’re less likely to potentially want to, you know,

stand in line for an hour.

I know when, for example, families had to initially go to the it’s easier

now, but for the vaccine, you had to go,

you know, take a whole day out of your schedule

three or four or five hours to go, stand in line to get a vaccine.

And if you’re depressed and can’t get out of the house,

that’s going to be a hard thing to do.

You know, there’s other like anxiety from a standpoint of

just like child care or anxiety about losing a day’s worth of pay.

Because your housing situation is so unstable right now,

because your work is unstable, getting a vaccine

is going to be really hard because logistically, you know,

it may take you a day to get it in a day to recover,

and that’s maybe time that you don’t have so.

So I think the mental health like depression,

but I think anxiety about, you know, I think so much anxiety right now about

what’s going on and just surviving

and finding employment and housing that I think that in itself

sometimes can, you know, for a lot of I think for people that have

more privilege and more resources, we don’t understand that,

you know, the hierarchy of needs

in the vaccine may not be at the highest for someone.

It might be. I need to eat.

I need to pay the rent

or I can’t pay that we were to get across town to the vaccine center.

So we have to realize that the stress related to survival.

You know, sometimes may get in the way of actually adhering to some of these

recommendations public health health recommendations because there’s,

you know, mental health and obviously environmental stressors

that that people have to kind of address first.

Absolutely, you meant

you mentioned several different things that made me think about

when you talked about depression and motivation

at the very beginning with COVID 19 vaccinations, you had to schedule

your appointment two weeks in advance and then you took the day off.

You had to even a lot three to four hours.

You also had to have a vehicle because some of them were just… A computer!

A computer yeah.

Yeah, and none of those none of those platforms made any sense.

I was like, I’m educated, I have, you know, UCLA educated masters

and work with doctors, and I had to book my appointments

for my older family members who didn’t, who weren’t,

didn’t have computer literacy and I couldn’t do it.

So I can’t even imagine someone in a community that doesn’t have internet.

Maybe it just has a phone. The website’s weren’t user friendly.

It’s still a little unclear.

What do you do for a do you just do you just walk into a pharmacy?

The other thing I’m going to add to it is you’ve got to put your name down.

You have to get personal information out.

What about the families that have

citizenship issues or their residency?

Right, and there’s a lot of politicized politicizing

right now about that for immigrant populations.

I don’t know if all of a sudden I want to go disclose

my personal information or I want to stand in line.

Am I going to be on a record somewhere?

They’re going to come back and have an address for me.

So that’s another kind of level of anxiety, but warranted, right?

Given the political nature that we face right now.

You mentioned immigration status,

and that also made me think about language and how, for some communities,

their language may not be English because it may just not be.

And so that could have also been another potential barrier.

In what ways do you think that these barriers were compounded for

the disability community?

Oh, I think I think significant,

I want to think of concern for our disability communities

that oftentimes people with disabilities also have complex

health issues. Right.

They have other coexisting medical

challenges and vulnerabilities

that makes it especially important for them to get vaccinated. Oftentimes,

you know, people with disabilities are really connected,

and it’s important that they have access

to their interventions, whether it’s like behavioral therapy,

whether it’s kind of group activities through the regional center.

And all of that stopped.

And the big concern for our populations of disabilities is that they were

disproportionately affected with the pandemic because, you know

, they’re so dependent on the services or service providers,

health care providers in the community, school services

and all of these things just went away. Right.

But in terms of vaccine, you know, hesitancy,

I think with the I think first and foremost,

we have to acknowledge that the disability community is very, very diverse.

And it’s very hard to say

this is the reason why for the disability community, I think that is the answer

is going to be complex because there’s so many different types of disability.

And for example, talking about someone who has, let’s say,

autism but doesn’t have an intellectual disability versus someone that does have

an intellectual disability, right ?

Totally different set of issues there.

Because someone with an intellectual disability, you’re now

talking about someone who maybe has less capacity

to understand the science or understand consent,

and maybe it’s more dependent on family to make those decisions right?

And what if the person may be OK with it?

But maybe the family’s not, but they have legal and medical conservatorship,

guardianship, and they’re not wanting to make the right to call.

Or they’re worried that because there’s already

preexisting health issues, that this might mean that there might be

problems for this individual disability.

So that’s 11 issue.

But I also wonder, you know, much of, I think the marketing

and kind of dissemination of information

about the vaccine, we have to really question it.

How accessible is it really to various populations?

Because when we look at is it accessible to, let’s say, communities of color

or marginalized or under-resourced communities,

but we also have to ask ourselves

the same question for people with disabilities is it

are the commercials or are the public health?

Effort important. I haven’t seen any of that.

I’m sure you big enough in social media platforms and disability groups

that that is there, but I don’t I haven’t seen that in the mainstream

really broadcast in the way that it should.

Yeah, absolutely, I think that’s something that

part of the project has tried to be really conscientious about

is making that information accessible because it’s

not very accessible and it’s not very mainstream.

In fact, one of our previous

told us about the ways that Zoom had really

upped their technology and including closed

captioning for all accounts, because that wasn’t

something that they had in their original programing.

And so in that way, it did become more accessible for specific

for many other communities where otherwise it wouldn’t have been accessible.

So you’re absolutely right

that there needs to be more specialized messaging for all, for all groups

that’s inclusive of all communities, all populations , as opposed to

just the general message that everyone is expected to understand

and just digest. So absolutely.

Yeah, and I think that’s where we’re at, right, I think we’re at this position

where the the kind of initial public health information

or waves of of of

education about the vaccine, an important vaccine.

And we’ve gotten, you know, pretty far with that.

But I still think we have obviously, what’s causing these challenges

now is that it said in the population that has not been

successfully targeted or addressed.

And I think part of it is people coming from

kind of more underrepresented, underserved communities.

But then also, I think, potentially challenges

within the disability community to help them.

I mean, even when you think of access in the more you know of fundamental ways

like, well, maybe you have a disability and you don’t have access to a car,

maybe you know, I know for a lot of individuals with disabilities

and autism, for example, the idea of getting a shot is so profound.

You know, a lot of individual disabilities haven’t even had blood draws

or standard kind of blood panels for years

because there’s so much fear about, you know, needle

anxiety or medical procedure because of sensory issues.

Right. So so that also is

another kind of dimension that should be really addressed.

It just getting people that are typically afraid of just needles.

How do you get them to feel more comfortable so that they could volunteer

to get the vaccine?

And that’s a big challenge is that we see in the medical system

is working with families around these issues.

I also think with disabilities, I think.

You know, we go back to children

getting the vaccines, and that’s important

because they’re all going to be going back to school now.

I think it’s twelve and up that have been approved for the vaccines.

And and again, children live in the context of family,

and there’s children with disabilities living with parents that maybe themselves

they could take their kid to to get the vaccine.

But maybe, you know, there’s some challenges there with family members

as well that we haven’t done adequate enough job of reaching out. And I think

I think we have to consult with the the

the disability community and really let the disability community

guide the messaging for families and children to get the vaccine.

So the next question is how has your training as a social worker

helped you to address patients’ concerns with the COVID 19 vaccine

during the pandemic?

I would say that the social work training has been incredibly

helpful because, you know, in social work,

you know, I think and I think if I were to, you know,

quote unquote be in charge, I would say that public health

really needs to kind of take a page out of the social work,

training and philosophy

because it’s all about meeting the patient where they’re at, right?

We have to be sensitive to the level of motivation.

We have to be sensitive to the left, to their current kind of stressors

in the community and what they’ve been through historically.

So, you know, meeting them where they’re at

and really, I think building relationship with community,

if you really want to have impact and change,

the fundamental element is is relationship.

And if you don’t have a relationship with community or clients,

you’re not going to have any change or at least your probability of change

is going to be lessened as we start to kind of get into these populations that

that have not received the message sufficiently or they’re more hesitant.

Or there’s all these other issues that we’ve talked about playing out.

I think it’s going to be really important to build a relationship

with these communities so that we can get to a higher level or vaccination rate.

And social work is all about the bio psychosocial really understanding the

the kind of environmental context understand the historical trauma

, context, the cultural context

and level of motivation, and

then working within the patient’s kind of with the relationship,

helping the patient to kind of recognize and talk about what are the barriers,

what are the challenges and how can we talk about that in a way

that’s not punitive, that’s not isolating or marginalizing,

and it’s respecting the values and opinions of the person

and respecting their autonomy and independence

and in and working within that structure to engage them.

Because I think when we do that, we can get people to come closer

to the idea of getting vaccinated, right.

But it’s when we start to become punitive

and I see a lot of messaging on media that I don’t think is really helpful.

And it’s not going to necessarily move the needle in terms of its population

or communities that are kind of at baseline, more hesitant.

I think we really need to get into the community

and do more work internally from from inside out

as opposed to top down, which I don’t think is as effective.

So social work, I think, has a lot of

good structures and strategies.

Thank you, Bobby, you remind me of

in certain areas that are more rural and isolated,

part of what the public health department does is they

get community members to speak to other community members they pay them.

And so in that way, they are educating them on what the vaccine is

in their own language and with a more familiar face

that they see as a more trusted resource that’s also more accessible.

So I definitely agree with you that it has to be

a more relational approach as opposed to the top down.

Mm-Hmm. Yeah, we think like that from a trust model, which has been

highlighted. Yeah.

And there’s a lot of kind of spin offs of that, but something like

that would be really helpful for communities that that.

You know, are more hesitant.

You know, what are some resources that you recommend to families

who are vaccine hesitant?

That’s a good question.

I would say, you know,

I think the medical professionals can be really helpful, but again,

we go back to you may not have access to a primary care physician,

but I know that there’s been like,

you know, several counties that have information mine.

There’s been a lot of resources online, but again,

do communities have access to those resources?

Are they easily or culturally sensitive or neurodiverse friendly?

Those are questions, right?

I would say, is there a trusted individual in your community

that has a position of leadership,

whether it be a priest, pastor, whether it be a teacher, principal or

whether it be, you know, someone that maybe you have access to that, that

that is, I think, responsible leader in the community

that potentially you could consult with and talk about.

But I know that again, there’s a lot of other traditional

like the CDC websites and and local public

health websites have set up a lot of pages for individuals.

But I think sometimes that might not be enough.

Information alone is not enough, as we clearly see.

It’s about relationships, right? So

talking to community members whom you trust, maybe whom have had

the vaccine can be helpful to get more information.

You know, people within your community, maybe it’s

like for the Latino community, is it a,

you know, a tia on our internet

hasn’t been collectively working with us,

but how we think such a great interview?

Thank you so much for your patience with everything.

Thank you so much, Bobby, for your very welcome.

We really appreciate it.

Yeah. I’m sorry that the internet was kind of rocky, but

if if you guys have supplemental questions, you want to ask.

I’m happy to meet with you guys and talk further.

Thank you very much.

Thank you, guys.

Thank you, everybody. Thank you.


Spanish Portion of Interview with Bobby Verdugo

Buenas tardes, hoy tenemos a un trabajador

 

trabajador social,

 licenciado a Bobby Verdugo.

 

Estará con nosotros

 contestando unas cuantas preguntas.

 

Bienvenido Bobby, gracias,

 gracias por tenerme aquí. Yo lo decía.

 

Baby, cómo usted cree que es mejor

 educar al público, específicamente

 

a la comunidad, discapacidades

 con discapacidades intelectuales

 

sobre su mayor riesgo de

 tener una respuesta negativa al COVID 19.

 

A la vacuna o a COVID?

 A la vacuna correcta, a la vacuna.

 

Ok, yo pienso que es importante

 que de reconocer

 

que muchos de nuestros clientes aquí

 tienen sensibilidades, viven con familias

 

y es importante que cuando nosotros

 estamos ofreciendo información,

 

que estamos incluyendo las familias,

 estamos incluyendo los papás,

 

las personas que están cuidando

 las personas de desabilidades.

 

Es también importante de reconocer

 que también a las escuelas,

 

las terapistas, a los que están

 

dando terapias de 

 

comportamiento, que esos también

 esas personas también

 

son importantes para dar la información

 adecuada a las familias.

 

Sobre la vacuna,

 porque todos los niños que tienen

 

debilidades están en escuelas,

 tienen maestros, tienen terapistas.

 

Eso es importante de trabajar

 con todas las personas que están

 

trabajando con el cliente,

 con el paciente,

 

la familia y también

 de reconocer que la familia

 

conteniendo a un niño

 con desabilidades es un estrés.

 

Puede ser un estrés

 muy grande para la familia

 

y es importante de que la familia

 

es obvia, que quizás

 van a tener un poco de ansiedad sobre

 

un proceso médico,

 en verdad una vacuna que quizás

 

pudiera causar síntomas,

 o quizás muchas familias

 

de comunidad que no tienen mucha

 formación pueden tener

 

ideas que quizás no son correctas

 sobre la vacuna, por ejemplo,

 

que puede causar más esterilidad

 o que puede causar COVID-19.

 

Eso es muy importante de 

 

tener esas charlas,

 esas pláticas con las familias sobre los

 

la ansiedad que quizás

 ellos tienen desde vacunar sus niños,

 

porque ya sé que muchos papás, quizás

 ellos se vacunaron,

 

pero no quieren vacunar sus niños

 porque es un temor

 

que tienen que quizás algo

 negativo va a pasar.

 

Y es importante de platicar

 sobre los estudios,

 

lo que sabemos sobre las vacunas

 y también tener un proceso flexible

 

de que si una persona dice no ahora no

 

quiere decir que en un mes

 va a ser lo mismo.

 

Esto tenemos que respetar el paciente,

 respetar la familia y que ellos quizás

 

tienen que tener tiempo

 para formar su opinión.

 

Y la actualización sobre 

 

de vacunar sus niños sobre nosotros

 es el rollo de nosotros.

 

Es de darle información,

 

de no juzgarlos, 

 

de no tratar de maltratarlos

 porque no quieren tomar la vacuna.

 

Tenemos que tener relación con la familia,

 darle la información adecuada

 

y trabajar con toda la comunidad

 que está ayudando a la familia.

 

Si es en la iglesia, si es una escuela,

 si son doctores, si son terapistas

 

y si todos estamos trabajando juntos

 

y estamos soportando la familia

 y ayudando a apoyar.

 

Si hay obstáculos sobre la vacuna tratando

 de curar, cuáles son esos obstáculos?

 

Si es cuestión de fe,

 en formación, de motivación,

 

si es que no tienen dinero para Uber,

 

cómo podemos ayudar a la familia

 a conectar con esas vacunas?

 

Es muy importante de tener esa relación

 para y platica para entender cuáles

 

son los obstáculos y quizás las preguntas

 y la ansiedad sobre las vacunas.

 

Si, exactamente usted, como lo dijo,

 respetar la autonomía de la familia

 

y respetar sus decisiones de la familia

 y como dijo que no es,

 

no necesariamente significa

 si dicen no en este momento que al rato

 

no tengan preguntas

 o que es muy importante mantener

 

la comunicación con ellos para que puedan

 explorar con ellos que son sus dudas

 

o que es lo que en el futuro

 tal vez estén un poco más interesados.

 

Qué recursos recomienda a las familias

 que duden en vacunarse?

 

Yo pienso que la primer 

 

primer punto de información

 fuera el doctor de ir con el pediatria,

 

de platicar con ellos sobre las preguntas

 y yo yo le sugiero a las familias

 

que escriban todas las preguntas

 que tienen, todas las ansiedades

 

que tienen sobre la vacuna,

 porque es natural , es algo que es nuevo.

 

No hemos tenido mucha

 historia con estas vacunas.

 

Los estudios a este punto 

 

nos enseñan que la vacuna si

 

son apropiadas y

 el beneficio de las vacunas

 

es la pausa, el riesgo de la vacuna

 

que ya sabemos que es muy muy muy mínimo

 

y es importante que familias

 puedan conectar con la vacuna .

 

Pero yo pienso lo que les sugiero

 a las familias que tienen preguntas

 

y ansiedades sobre eso, sobre la vacuna

 es de platicar con su doctor,

 

porque el doctor yo pienso muchas veces

 

teniendo su hijo

 el doctor o usted tiene un.

 

Los papás tienen sus propios doctores. 

 

Hamos tenido esa historia con el doctor,

 le tenemos un poco de relación

 

con el doctor y le tenemos

 

valor en lo que ellos dicen, verdad?

 

Porque estamos teniendo

 esta historia con ellos.

 

Yo pienso es el primer punto de contacto

 que yo tenía, era la segunda sugestión.

 

Yo pienso es de platicar

 con otras personas en la comunidad que

 

uno le tiene fe y que sabemos que quizás

 ellos sí recibieron la vacuna

 

para ver cómo fue el proceso,

 cómo fue el proceso para ellos,

 

como cuál clínica o cuál

 

va quizás tienda o farmacia,

 

pues pueden pudieron obtener la vacuna

 

y cuáles y preguntarle

 cuales fue la experiencia, porque para

 

muchas familias hay muchas personas

 que han obtenido la familia.

 

La vacuna no ha sido algo negativo,

 

no ha sido algo en

 que se han formado drásticamente.

 

Quizás son síntoma

 de sentir un poco de fatigado,

 

un poquito de dolor en el hombro,

 pero es todo por la mayoría.

 

Eso es importante de platicar

 con otras personas y en la comunidad

 

sobre nuestras ansiedades o puntos

 de pregunta que tenemos sobre la vacuna.

 

Pero también hay mucho, muchas opciones

 también que tenemos vía la computadora,

 

la computadora, el internet,

 a muchos gobiernos,

 

a departamentos de salud.

 

Han desarrollado páginas de internet

 con información sobre la vacuna

 

y muchas preguntas que muchos pacientes

 tienen hoy tienen las respuestas

 

en esas páginas. 

 

Eso es muy importante

 de revisar esa información.

 

Y también yo pienso,

 como decíamos antes, es esta

 

bien de tener un poco de preocupación

 

a si uno no está listo, no está

 al momento de tener la vacuna está bien,

 

pero es importante

 tener mantener a la mente abierta

 

y quizás platicar con más personas

 y tener la más información

 

que uno tiene lo mejor,

 porque entonces tenemos la oportunidad de

 

hacer una decisión basada en información,

 

si es de internet, si es de con el doctor,

 

si es de la con la enfermera y también

 

platicar con las escuelas también

 si nuestros niños están en las escuelas.

 

Muchos de los consejeros en las escuelas

 

tienen mucha información y acceso a

 

puntos de información

 para familias que quizás tienen preguntas,

 

especialmente hasta cuando familiares

 y hasta lo estamos preparando

 

para entrar otra vez

 de nuevo en las escuelas, de nuevo

 

en el nuevo año académico.

 

Sí, exactamente, muchas

 gracias por las excelentes recomendaciones

 

y especialmente escribir la pregunta

 durante meses a los padres

 

a unos se les olvida las preguntas

 que tienen en ese momento. Entonces,

 

muchas gracias por las recomendaciones

 y por su tiempo. Muchas gracias.

 

Gracias, Lucía y muchas gracias por el

 proyecto que están haciendo ustedes.

 

Es muy importante este momento en tiempo

 de que tratar de ayudar a entender un poco

 

es lo principal para entender

 cuáles son las preocupaciones

 

que tienen comunidades que no han tenido

 acceso, que no han tenido

 

la oportunidad de vacunarse

 para tratar de ayudarlos, para

 

si hacen formación o no, si es cuestión

 de dinero u otros problemas.

 

Obstáculos para trabajar con las familias,

 para ayudarlos a soportarlos,

 

a que se puedan vacunar.

 

Gracias por el trabajo que

 han hecho, hasta las gracias.


Interview with Dr. Eric Curcio

Dr. Curcio is a primary care physician and he specializes in internal medicine and pediatrics right here at UCLA health. He received his medical degree from New Jersey medical school, and he completed his residency at UCLA School of Medicine. We learned about Dr. Curcio’s perspective as a physician working on the needle anxiety program. Additionally, we discussed what we can learn from this program as we try to increase vaccine confidence in the disability community

Dr. Curcio Interview 6.21.21

Wed, 6/23 1:03PM • 29:39

SUMMARY KEYWORDS

patients, anxiety, people, vaccines, phobias, needle, procedure, child, support, hear, important, program, bit, distraction techniques, parents, disabilities, reassure, community, nervous, ucla

 

00:03

So we’ll go ahead and get started. Hello, Dr. Kersey. Oh, we’re really excited to welcome you in to interview for our program to discuss the needle anxiety program at UCLA and just learn a little bit more about needle anxiety and what you’ve learned about it specifically within the context of the neurodivergent community and the disability community as well during the covid 19 pandemic. So I’m My name is Laila and I’ll be interviewing you today along with LUCIA JUAREZ, Julie grassy and and Nicholas Shaw, who are also working on this program. And we’re specifically interested in learning about your perspective as a physician working on the needle anxiety program and what we can learn from this program as we try to increase vaccine confidence in the disability community. Before we get started, for anyone who’s watching this video, I would just like to introduce you. So Dr. Eric crucio, is a primary care physician and he specializes in internal medicine and pediatrics right here at UCLA health. He received his medical degree from New Jersey medical school, and he completed his residency at UCLA School of Medicine. So with that being said, Are you ready to get started? Dr. Chris, you? Absolutely. Thank you. All right. Wonderful. So first, we would just like to hear a little bit more about the needle anxiety program. Could you tell us a little bit more about the goals of the program in particular?

 

01:16

Yeah, absolutely. So this, you know, this was a project that we had kind of really a problem that we knew that we needed a better solution for for years now. And it probably was about two years in the making between when we first envisioned it. And it kind of serves as a multi pronged approach, really, we knew that basically, we could be doing a better job with procedures for everybody really, you know, there’s so much anxiety that doesn’t get talked about, and probably a common reason why people maybe skip out on those physicals or missing appointments, people who have, you know, serious, deep seated phobias, or needles. Now, there’s certain groups, particularly disadvantaged by this, I think what we saw that really prompted us to find this was a lot of clothes and myself, take care of patients with a variety of medical conditions, a lot of developmental delays for diversity. And those patients in particular, we’re really getting yourself out to collect medical treatments for these kids, adults, medication that they need to be monitored, every test that you’d look back, and you can see years have gone by, and none of these tests have been done. And when you look at the billets, who would always be you know, unable to get unable to get blood. Because you know, those those patients are, you know, particularly high risk or not being able to explain or understand the procedures. And it was really a problem that we had, what would have been done beforehand would be this sort of wait until they needed something major that required like Asia, so maybe they were going in for major dental work or something. And when they went in for that you can quickly do their blood vaccines and everything else. But that’s a district as you might wait years. For that sort of second tier of the program, you know, the first year was really just coming up with ways everybody to have our nurses trained better to training procedures, patient control and how they wanted to play on wanting to distraction, they wanted us things like that, we came up with the second of our program, which include things like the buzzy for children and other distraction techniques, there will be one of our colleges to be involved in kind of do the type of the whole things. And then the area that’s probably gotten the most attention, or which are the most challenging case, most of the reviews for vocational development really couldn’t understand. And that’s doing it as a base case of anxiety medicine that can be done right before the procedure and really have a calming effect. For everybody, for sure. We have had quite a bit of success, new Alto, I think kind of came up with the ideas behind it and identify the need and then I do a lot of work more on the implementation operation. So, you know, we did a fair amount of literature searching to see how other health systems had handled this. There’s a ton out there, you know, we kind of base our model with a few things we found from dental literature for doing sort of mid level procedures for patients with dental phobias or developmental issues. There are a couple of case studies of pediatric echocardiograms used for set, but we couldn’t really find much of anybody. We used it for this specific but it’s logical as they will translate. supports those protocols were able to find and then almost a year ago started doing our first Three August last year. Okay, so after about two years of figuring out all the processes getting anesthesia, ambulatory nursing and everyone else is, first and foremost, we needed to save safely, we needed to have emergency plans in place. But what we found and what we all spread in the literature is done right. And protocols followed it really is. We haven’t had any negative attraction. Yeah, that’s a little bit at the back.

 

05:34

Yeah, it seems like you’ve developed a really comprehensive program that caters to the needs of a lot of different types of patients. I’m curious, kind of, in your experience working with these patients, what are some of the underlying reasons that patients have provided surrounding their needle anxiety?

 

05:53

Probably when you ask most people who have that the needle anxiety most can’t give you a good reason why they have it. There’s just a subset of people out there that have these phobias, they might have had a bad experience, they you know, there’s a subset of people about what we hear of somebody who every time they get their blood drawn has a fairly high chance of passing now. It’s beyond their control. It’s not an anxiety issue. It’s just a visceral response their bodies have where all their heart rate and blood pressure. But like many phobias, so people really know why they have, it’s not usually a bad experience from memory, but probably something maybe dating back to childhood maybe years that they can’t even remember. So the phobia side, probably about half of the patients that we see are more in that group as you’ve been putting off, putting off drugs because of that. And then the other half is really more than the the neurodevelopmental disabilities, these are patients that can’t understand necessarily what’s happening, or maybe have already VHD or other hyperactivity kind of conditions, particularly a lot of different things. And then that group, it really is just trying to make your hands as pleasant as possible as productive experience for them. Because once they learn that this place is associated with pain, or this place is that scary place where people come in and hold me down aggressively or something like that. It’s really hard to undo that kind of damage. And now they’re going to have this you’re probably walking into every medical office, because they all kind of look the same young, potentially for the rest of your life. So we want to do what we can not pretty more phobias, inadvertently from negative experiences, if we do hear that a lot of parents that the last time you had blood drawn, we had such a setback in their anxiety levels spiked so much, because yeah, they went, where were they had a bunch of people grab them and hold them down? And wait, no, that’s great.

 

07:55

Yeah, thank you. And I’m curious to hear for you, the other providers or for anyone listening? What is kind of something important to know regarding working with families or patients with disabilities regarding needle phobia, while still promoting vaccinations and inoculations?

 

08:15

Yeah, I mean, for starters, I’d say the most important thing is nobody likes surprises. As much as in development, well, the patient in mind, the more we can explain up front, maybe you walk through the scenario, talk through how it’s going to go. I think, you know, a lot of times parents do the opposite sometimes, or caregivers will do the opposite, where oh, I don’t want to upset so we’ll just get on them last night. Nobody likes that, right? It just breeds this just make that phobia that much worse. You know, there are books about this pamphlet, there are online resources out there that you can use to really talk through how this is going to talk about if it’s a play that we’re going to do. We’re gonna feel a little spritz of fluid in your nose, maybe try that at home with a nasal spray over the counter just to kind of really build that confidence of knowing what to expect. So I think we found that the cases go fast, when when patients know sort of what’s coming. They’ve talked about it before they’ve walked through it as much as they can. So that honesty is definitely an important step. We also want our families to know that this is not a cure, all right. But if there’s somebody who’s so extremely anxious, this one one dose of anxiety analysis, that we tend to repeat doses, because that gets more into the safety side of things. So it’s not going to work for everybody. But we figure if this work for you know, half two thirds of cases, that will still have to figure out that other case, probably working with those right now.

 

09:54

Wonderful, thank you very much. And just to kind of elaborate from that question, can you tell A little bit more about how you communicate with patients directly surrounding their needles anxiety or getting shots in particular.

 

10:07

Yeah, absolutely. So, you know, this might be a lengthy process, it might just be at the time of the visit, if it was sort of an unexpected thing. But you know, a lot of times people will either directly voice concerns or caregiver or family might, but a lot of times it’s more in the subtleties of you say blood and you see the kind of recoil or say, Oh, can we do it another day or something like that? Get this going on? And then just try to have an honest conversation. You know, I see maybe a little bit nervous about about the vaccines you have a bad experience before? Did you have your, because like you felt the need, or maybe it’s just about vaccines in general, or about medications or something else, you kind of need to know, if it is about measles, I think it really is referring to a lot of patients, families know that this is something that we’re just rushed off or eyes and say, Oh, really critical. But no, this is something that we identify the problem with common kinds of scenarios, we built this program around it. And I think a lot of times, knowing that are nurses trained in this, this is taking you off, you passed out once paid, we’re gonna have, we’re gonna have you lie down, we’re going to watch for a while afterwards, just those kinds of things alone that we’re going to, we’re going to take it to her, I think, again, if it’s something that’s going to be more of a planned thing, where we’re going to bring them back now for that we’ll talk about, you know, why we do this, how it works, what to expect. It’s a funny feeling, getting this, we should create into those what we’re hearing, burn is quite the right word, but it’s an odd sensation, I think. So making sure patients go to expect that. And, you know, encouraging them to, you know, whatever is going to help calm them down the most might be something like a buzzer, or distraction technique, or kid this may be accepted on the videos, whatever else helps them calm down. Maybe there’s a buddy who really liked us. And with headphones on and distraction that way. Maybe that’d be what kind of gets.

 

12:17

It’s kind of like anything else. I come up with a plan that everyone comfortable with.

 

12:26

I see and has this sort of communication or this sort of approach changed when you’re talking in context of the COVID-19 vaccine or just in the pandemic times in general. Yeah, I mean, COVID certainly heightens everything a fair bit more, when you look at the rate of young people who are passed out after vaccines is not almost certainly related to the actual vaccine itself. It’s more related to both knees and everything, the rates much higher for this, I think it just speaks to that extra level of anxiety. But everyone really has about COVID. You know, there’s a lot of information on where money news is often not that accurate. political issues and other things, it’s really just left people are undecided extra nervous. They’ve heard that somebody they know how to really bad reaction to the second dose, and now they’re extra nervous about it. But you know, we look what’s happening here now that we finally sit down and allowed reopenings No, that’s pretty much thrown out. So people at the same time know it’s important. So it creates this kind of dissonance, I think where they know they need to do it. But they’re also extremely nervous about getting it is a good opportunity. I think he just talked about all these different features of comfort, reassurance. Even more for that I hate to have no fear of needles being are the reason why somebody chooses not to get a COVID back. If there’s things that we could easily do that would probably make a pretty, pretty benign. What we often hear from patients, you know, there’s sort of mental image of them, you know, walk themselves through this in their mind of how horrible it might be, when they actually do the procedure, especially with respect to filming now, they said maybe, you know, whatever else is going to help them. The end result oftentimes is Oh, it wasn’t that bad. And it turns out the vast majority of patients, ie your patients as well as very diverse developments, patient, the best journey don’t ever get to that theory but don’t end up needing the anxiety medication, really just behavioral approaches can take care of most. But COVID has definitely shifted the spotlight I think on all the founding teams

 

14:52

and kind of um he’s you know, many interactions I’m sure you had. Do you have any particular anecdotes or particular Patient interactions through this program that you would be comfortable sharing with us and with the neurodivergent community.

 

15:06

Yeah, absolutely. I from last recap, one have a 14 year old with a rare genetic condition that was part of it has a developmental disability component to it. But had had to go before with vaccines, whatever, we had actually talked about maybe getting too much history. But we ended up bringing him in with that there for support with distraction techniques, but you know, the iPhone out and favorite videos playing on Tick tock, if I remember, right, and, you know, dealt with those distraction techniques or numbing medicine, he had a completely pleasant experience, barely even notice that he had gotten the vaccine by the time was done, and left her you know, with a smile on his face, not having that negative association. And that’s gonna make our lives much easier next time, he needs a boost for vaccine. But I think, for the family to kind of see that, you know, with these interventions, having supported president holding down a restraining, or those kind of things, that we were able to do it safely, that we were able to get it done and not in any sort of stressful or more anxiety ways. But I think we all if you ask the other doctors, I think we’ve all got examples of these. If you think or one of our politics was the passion project, we did a lot of training with the nurses, the medical assistants, in our office, office across.

 

16:48

Ya know, it seems really important to build an environment in which you’re not provoking further anxiety, but helping to ease the patient while also providing them with with quality care and getting them all the procedures and all their occupations that they need. And so when it comes to context of younger or for neurodiverse patients in particular, how do you as a physician weigh the benefits and the risks of the COVID-19 vaccine for those patients that may have needle anxiety?

 

17:14

Yeah, I mean, well, we know the benefits are potentially huge, right? We know that, you know, patients with autism patient with developmental delays, we’re seeing worse outcomes with COVID. pretty consistently, they were getting diagnosed later, they were getting tested later. And we wonder why that is. I mean, it could be it might even be anxiety that’s kind of playing in on patients, or parents or or caregiver who’s now even more afraid to bring them in, because now they’re gonna get this nasal swab that we know is comfortable, oh my god, they’re gonna go into the hospital, we know how disruptive that can be to their routine, because disruptive to anybody, and especially somebody who maybe can completely understand what’s happening or something like that. It’s weird. But, you know, what’s the end result is that, you know, we’re hiring to death batteries, ventilator use in patients with those types of disabilities. So, you know, the benefits, and the risks of not getting it early, or the risk of not getting the vaccine and for COVID risk road are huge. So I think it’s a hurdle that needs to be overcome and taken seriously to build that support. But, I mean, it’s so important, I think that, you know, patients not put off, you know, important medical procedures out of fear of something that we’ve done, right, probably shouldn’t be all that fear provoking, at least most people.

 

18:41

Thank you very much. And we’ve discussed kind of the context of younger patients and neurodiverse patients, but I’m sure you work with patients across a kind of all age groups. And so how does your approach to discussing middle anxiety and more broadly, their care as well, along with the ramifications of any sort of procedure vary depending on the age of the patient?

 

19:04

Right. I mean, there’s, you know, obviously, everything you do has to be developmentally appropriate for whoever you’re talking to. I think, you know, it highlights the need for family centered approach a lot of times for bc it’s a very different discussion group talking about their newborn. who, you know, we’re a couple of months old means x y&z Oh, that’s reassuring Mom, it’s going to be maybe letting mom nurse right after the procedure to calm down maybe letting her hold the child on her lap rather than you know, being on this table or something more intimidating or mom feel more removed from the situation. And then the discussion is going to be different with a school aged kid where maybe we can encourage them to tell the child ahead of time because now the child knows is asking that question you never want to ride on the building. It’s just there. And maybe if the if we know this as a child as a major issue with vaccines Trying to get prep them ahead of time use those that are out there. If it is a an older patient with a neurodevelopmental disability or something like that it really is meeting them where at the level they’re at with the understanding, they have giving them a chance to answer any questions that they have, and get those concerns addressed. And still being there to support the families, because oftentimes, they’re equally as nervous about the whole situation. But we see needle anxiety through the entire age spectrum, we have plenty of patients, they’re young 70s 80s, who also still hate needles, doesn’t go anywhere. For most people, if you’re one of those people that are affected by a disease probably be there, you know, maybe you have to deal with your whole life.

 

20:47

Right? Yeah, thank you very much. And you mentioned, particularly for children, kind of incorporating their parents into that procedure, or just building an environment in which they’re more comfortable. I’m curious if you have any other advice specifically for a parent or a caregiver, to assist their children that have needle anxiety, either at home or at the clinic?

 

21:10

Yeah, I mean, it’s, you know, family is important part, probably, regardless of age to for a lot of people have a support person, there can be huge. at any level. Again, I think it’s just time to think about, what could we do that would put, you know, this patient that they’re most comfortable, and maybe it’s going to be bringing a support object, or if we have a favorite toy, or if we have something that we can bring in a younger kid that we can have with us for support. On occasion, we’ve had people bring their emotional support animals, if that’s like, that kind of helps. Great, you know, whatever it’s gonna be. And it does have to be customized by the points because everyone’s going to have different distraction. That is that they were people want to meditate, some people have a really tough time doing that. And now more and more we go more with music or something else, there’s no kind of one size fits all approach, I would say.

 

22:15

Right, and I’m just gonna move a little bit more broader and just hear from kind of your experience working with patients. What are some kind of comments, questions or factors about needle anxiety, that, in your opinion, are the most important when it comes to raising awareness, either about the issue that needle anxiety itself, or just to the fact that there are resources for people who have needle anxiety amongst the community? If you have any thoughts or opinions on that?

 

22:42

Yeah, I mean, it’s, it’s tough, because one of the hallmarks of phobias, I think, in general is not wanting to talk about it, right, we tend to avoid things we’re afraid of. So a lot of times people really voice voice screamed, patients, just occurred around like anything else, just to be open and honest, you know, with, with your medical team, with the doctors, nurses taking care of you compared to they want to do what’s best for you, and they want to do it in a way that’s gonna make you most comfortable. And on the other side, I think providers, you might know, somebody didn’t know, oh, this is the third time you’re back, you spoken, get that blood work done. You know, and taking that step back to try to dig into why you might be surprised to find us. We’re just, we need help on the search for scientific transportation or get support or something like that. Or maybe it will uncover that bad experience that happened before or if you’re have one of these deep in phobias are that bad experience that happens as a kid or whatever it might be? Just people really kind of keep communication open both ways. Be aware that it’s a combination, to be aware that it’s a common cause why people are getting multiple health care. And then just

 

23:59

and then just based off of your experiences, what are some of the kind of biggest myths or stigmas surrounding the intersection between vaccine hesitancy and neurodiversity that should be broken?

 

24:11

Yeah, I mean, probably not so much related to the needle side of things. But we all know, there was a lot of air and fear put in by studies that were, you know, later discredited, specifically around the MMR vaccine and autism, and that kind of got broadened out to many other vaccines and things like that. And despite, you know, countless studies and excellent research, looking at huge groups, populations, this proving that, you know, beyond the shadow of a doubt, and you know, that study having its own, you know, ethical concerns and being recalled and retracted you that are still out there. And then the last thing any parent wants to do is do something that could possibly hurt their child or even the slightest stress. And I think because there’s misinformation on the web, Now for the people who can’t get any media on your site. And then you don’t see so much of polio and things like that, because Luckily, they’ve done their job and really low, it puts these tough positions where they see a lot of negatives. And the positives are quite as obvious. I think, you know, again, it’s having that dialogue it’s trying to get to the root of a person CERN’s was a good article they read was it’s being their friend told them is there some better direction, we could point them to give them some good information that is out there and give them you know, the things that reassure us as physicians that what we’re doing is, and I think a lot of times, you know, as parents read into that more, that can help reassure them, it’s scary. I mean, you know, nobody, when it comes, especially to taking care of family members, children, I think we’re even more more nervous. Anything that could cause harm, but every parent you’re at the end of the day wants to do what’s best for your child may have just put a navigate to the information that’s out there. And I think we should remember that and just try to move that dialogue further. That’s going to have the best outcomes given people. We think about vaccines to you, they are hesitant to maybe come up with a plan or take them one by one and look at the research data out there. And when most people see the real data there, it is pretty reassuring to hear the medical community is as confident as they are.

 

26:26

Right. And I just have one more kind of broader a specific question for you. I was curious to see if you had any advice for providers or other health care professionals who may not have a formal needle anxiety program on how to approach or communicate with patients who have disabilities and who have some sort of needle phobia?

 

26:49

Yeah, it’s tough. I think the lesson is that you don’t really need a very informal type program to do probably 80% of the work. They’re they’re quick skills that we already have. Time is one of the biggest things. And I think that’s something that all physicians with your you have, you should arrange your appointment times that are often dictated by the health system. And you know, when you’re rushing these things, first to go that taking that extra minute or two to really get to the root of a problem. But at the same time, we know, that’s what a lot of health disparities and for groups that, you know, are diverse disabilities. So you’re being thoughtful that you know, this needs to be addressed and maybe revisit periodically to check in is important, maybe scheduling those patients are a little bit of extra time, maybe doing that prep work ahead of time during email or something like that. A lot of the words pretty dumb for him be huge. But I think all of us are trying to provide the most equitable care that we can. And this is part of that duty, really.

 

27:58

Thank you very much. That’s really great advice. And hopefully, we’ll be able to, or the this type of program or this type of approach will be able to be implemented across the nation and be able to help people who have needle phobias. And then, yeah, and then just last thing, I was wondering if there is anything that I haven’t asked you or that we haven’t discussed today that you think would be important to share with the neurodiverse community? Um,

 

28:24

yeah, I mean, I think we touched on kind of a lot of the highlights. But again, I think the most important thing is just communication, right? You know, and this is, could be generalized to many, many things beyond this, but patients are often hesitant to have these conversations with doctors, probably fear of judgment or a negative experience that they had with another health care provider before but, you know, to get the best you can, the most important thing by far is to just have that open communication with your physician to be able to talk about the awkward things about the things that are inherently, you know, anxiety provoking, as tough as it is, knowing that, you know, nobody’s making any judgments everybody is working towards this goal is probably the most will help you get the most out of healthcare and in any setting, really.

 

29:15

Thank you very much, Dr. crucio. That was the final question that we have for you. But otherwise, we really appreciate you taking the time out to come talk to us and to our community as well about middle phobias and the program at UCLA and hopefully, more and more people will be able to take advantage of the program.

 

29:32

be great. Thanks so much. Let me know if there’s anything else I can help with. Wonderful, thank you. Bye now.


Interview with Nurse Kendal Wilkie

Kendal Wilkie is a registered nurse at the UCLA medicine pediatrics comprehensive care in Santa Monica, and she is also a clinical nurse working on the needle anxiety program. We learned about her perspective as a registered nurse working on the needle anxiety program. We discussed what we can learn from the program as we try to increase vaccine confidence in the in opportunity for COVID-19 in the community with disabilities.

Dr. Wilkie Interview

Wed, 7/7 9:59AM • 24:59

SUMMARY KEYWORDS

patients, vaccine, clinics, anxiety, vaccination, program, sedation, rn, people, important, vaccinated, patient population, doctor, needle phobia, needle, family, parents, understand, nice, caregivers

 

00:04

So I cannot thank you again for making time to speak with me. I’ll introduce myself again, my name is mocha. And I’m being joined by Julie lucea. And Michelle and I would love to introduce you and provide you with an opportunity to give us a little background about your, your career and yourself. So I’m joined by Kendall Wilkie. She is a registered nurse at the UCLA medicine pediatrics comprehensive care in Santa Monica. And Kendall is also a she’s a clinical nurse working on the needle anxiety program. Can you please be able to introduce yourself as well?

 

00:41

I’m sure of course. My name is Kendall. I’ve been a nurse here at UCLA for the past 15 years. I’ve been at that UTC clinic where we’re doing the needle program for the past two and a half years now. And yeah, it’s it’s just lots of lots of interesting opportunities. The clinic definitely we see everybody from newborns to the elderly. It’s it’s a fun place to work, lots of challenges.

 

01:06

Great, thank you so much for your time, Kendall. And we want to provide you with a brief summary of why we’re doing this interview. So we are interviewing you to discuss the noodle anxiety program at UCLA to learn about the program at what you have learned about the new anxiety in the neurodivergent. And in the disability community with disabilities. During the covid 19 pandemic. We are specifically interested in your perspective as a registered nurse working on the needle anxiety program, and what we can learn from the program as we try to increase vaccine confidence in the in opportunity for COVID-19 in the community with disabilities. So my first question was, will you be able to briefly tell us tell us about your role in the needle anxiety program?

 

01:53

Absolutely. Um, Dr. Kuo approached us last year regarding doing the program, there was a lot of things to put in place, kind of from a nursing perspective, we had to be signed off from ambulatory, we have to have certain emergency equipment in place, we have to have certain training for the staff. So once that was in place, we went go live on in August with the with the program. So it’s a it was a little bit of structure set up before we went live. But definitely Dr. Koh has been has been the advocate for this program for a while now. So it’s really nice that it’s actually come to pass.

 

02:32

And can you tell us a little bit about how has this program helped the neurodivergent community during the covid 19 pandemic, and the vaccination efforts with relation to COVID-19.

 

02:43

So definitely, I mean, not just with the COVID Panda, but we haven’t seen too many of our patient population requiring the anxiety program for COVID vaccines yet, we’ve only had one person, but definitely for general lab work for vaccines. It’s you know, the there’s a certain patient population that it’s it’s very hard to get to get those kinds of orders performed. And some patients need monitoring for drug levels, things like that, that classically they haven’t been able to. So it’s been a really, really good opportunity. The families have reacted very well to it. And we’ve had, we’ve had some successes, we’ve had some failures to some patients, we were not able to administer the medication. But we’ve learned from everything we’ve evolved our program, we’ve evolved, how we how we approach it with families and things. So we’re constantly learning and improving the process. But definitely I think for particularly with the COVID vaccine, it’s going to be absolutely amazing to reach out to, to our patient population to be able to vaccinate.

 

03:39

Great. And overall Can you tell us how many patients have participate in the participated in the needle phobia program to the state?

 

03:48

I can so I put together some information, I can send it to everybody in an email as well. I apologize for not getting back to you before. And we have done actually 14 patients today we have about another five more over the next month or so. But 14 to date of which we have successfully given vaccines and done lab work on eight of the patients. So it’s pretty to the 50% success rate. We are still working, as I say there are there areas to improve upon all the time we’re learning and evolving. But it’s been very successful for a number of patients. Great.

 

04:21

And you describe some of the reasons why patients have stated they have needle anxiety.

 

04:28

So for some of our patients, they just had bad experiences with coming to the doctor’s office, they’ve had, you know, maybe a vasovagal episode after they’ve had labs or vaccines in the past. And when they were children. They had bad experiences. So it stays with a lot of patients for a lifetime for some of their special needs patients or our autistic population as well. There is that resistance. So it’s a change in their routine. It’s a new place, going to the doctor doesn’t always have a positive positive thought behind it. So I think that’s some of the barriers to why Patients have this anxiety even just generally walking into the doctor’s let alone getting vaccines and lab work. And how can you describe the results of the program and some of the successes? Absolutely. So what we found the best successes with is obviously reaching out to either the patient or the patient’s family before they come in to do a really good rundown of what our program offers exactly what to expect when they get here, particularly for some of our special needs patients, we want to minimize the amount of time during the waiting room, we want to minimize the amount of time they’re in the clinic. So we don’t want to bring him back to a room and not be ready to go. So it’s having that conversation a week or two before with the family to make sure they understand this is what we’re going to do. This is the medication, this is how we administered that we’re going to monitor you closely, we’re going to monitor you afterwards as well to make sure you’re back to your baseline so that no one walks in that they’re not prepared that I’m going to be here maybe for 30 minutes to an hour. That not to know what to expect, because some of our patients, even though we go through it, with just getting near them to get the nasal spray, which is how we give the medicine can be very challenging. So one thing we have learned is to speak to the families beforehand, and you know, at home, try using a sideline spray just so that they used to that concept of having something sprayed in their nose, we’ve we’ve learned that through through trial and error. So it’s it’s a it’s a process. Yes,

 

06:19

I think so one of the what I’m hearing is one of the important strategy is to help prepare the families and the caregivers before they come to the clinic.

 

06:28

Absolutely, absolutely. That’s been Paramount so that they know what to expect so that they can and we also want to encourage them, you know, bring things that make the patient feel more comfortable iPads, earphones, anything that can make them have a more positive experience. Absolutely. And we also want to work with them on you know, keeping the patient to a routine as much as possible, we don’t want them to have to come in, when is the lunch time when it’s you know, time that they would normally be doing something else. So there’s a lot of different factors to consider when we’re scheduling as well.

 

06:57

And what are some metrics I do use for this program to measure the success.

 

07:02

So we’ve been keeping count of basically the amount of medication, we can get between five to 10 milligrams of sedation. So we’ve been monitoring how much we’ve given and what our success rate was, whether with the sedation, they were able to have the procedure done, whether they were able to have vaccines and lab work, just lab work. So we looked at every every side of it, whether we’re able to even administer medications to carry out orders. So we’re monitoring and measuring all of those.

 

07:33

And what is important to know regarding working with families and patients with disabilities, and needle phobia while still promoting vaccination.

 

07:45

So it’s it’s important that everyone’s on on this, you know that we were all working towards the same goal. We want to help, you know, promote vaccines in patients and obviously get the families just understanding the process and definitely that we want to our goal is to help to make that happen, really. And that’s what we strive to do. We do prepare the families that it’s not always successful. We don’t want to be saying that, oh, they’ll come in and witness sedation, we’ll get everything done. It will be everything will be good. That’s that’s ideal. But it doesn’t always happens. We always want people to have at the back of their mind that if it doesn’t work, it’s okay. It doesn’t work for everybody. But definitely it’s been such a booster to make sure that we can reach out to this patient population and assist them to receive vaccines. It’s so important.

 

08:28

And what are some strategies that do utilize to meet the patients and the caregivers in the middle? So in the middle in terms of in middle of hesitancy for vaccination, you know, anxiety, but also providing the importance of vaccination? That’s it. I

 

08:46

mean, definitely, they genuinely have a meeting with the doctor who’s placed the order, who’s obviously spoke to them regarding vaccines, and we’re just, you know, working alongside the doctor to just to work with the families well to promote what the best thing for their patient, you know, to make sure that they understand everything regarding vaccination, potential side effects, everything like that, but also, you know, risks and benefits, we want to explain and make everything clear. And,

 

09:13

according to you, why is it important to discuss needle anxiety with your patients, especially for our COVID-19 vaccination or other vaccination efforts?

 

09:24

So we want to basically with regard to needle anxiety, we want to understand you know, what kind of what it How is their anxiety presenting is it that they you know, they’ve had a negative experience, that’s what they’re associated with, do they have vasovagal episodes, everything like that, because we want to, you know, make sure that they understand the important they want the vaccine that they understand how important it is and just how we can help them to meet in the middle I explained to them, the process will have you laid down we’ll have a nice quiet room. We made it very clear that when the patient gets to the clinic, there’ll be no vaccine equipment, no lab equipment in the room so that way they can relax in a room. In a comfortable environment before they’re introduced to any of that, that’s very important to us. And

 

10:09

can you provide us with an example or an anecdote of working with a patient with disability and or their family caregiver who has needle phobia?

 

10:20

So we’ve had a few actually. And we had one that does spring to mind he, his mum was wanting him to be vaccinated, but they’d had a negative experience when he was child, he’d received a vaccine and spiked a very high fever afterwards. So she was understandably anxious regarding the vaccines we spend a lot of time talking through before she came in about the vaccine. And then when he came in, we let him you know, we work with the parents, once they get in the room, we say how things should we proceed. And they said, Can we have like five or 10 minutes just for him to climatized. So we did that. We came in when the parents were ready, and it’s it’s taking the time, you know, it’s not something you can rush, it’s not we walk in, right, here’s the sedation, we want to get time to kind of bond with the patient and the family, we want to them to explain as much as we can, what we’re going to be doing and work with them. Because if we just go rushing into trying to date, they’re going to be fighting us, they’re going to be uncomfortable, they’re going to be agitated and upset. So it’s, it’s taking the time to really work with them and the family put them in.

 

11:19

Yeah, and I want to expand on that. Can you provide us with some of the strategies that you use to communicate with these patients and families during this process.

 

11:29

So like I say, the wait time before they come in, we talk to the family on the phone, when the patient comes in some patients have communication devices, somebody had through the iPad, we can communicate with him via that way. Or the parents will use a sign language or something like that. So sometimes it’s the patients during the communicating for us. But we always address the patient, whether they have the understanding or not, we always want to talk to them, include them in everything we’re doing would tell them what we’re doing. And we work with the parents to you know, how can we make sure he understands that I’m going to be touching his arm, how can we understand and going to be approaching him to give him a spray, just and you know, even join, because we want vital signs beforehand. So we want to make sure the patient is comfortable that we’re going to be touching their arm, we’re going to be touching your finger. It’s constant explanation and working very much with the family for a lot of patients just to make sure they’re comfortable. Sometimes, the parents will put on the pulse ox probes, the parents will help us put the blood pressure cuff on the parents are really involved. And that’s that’s what we want is like a team approach that way the parents were involved. And that’s I think, when we have the most success.

 

12:31

And does this strategy differ based on the age of the patient? Or is it very similar?

 

12:37

It’s very similar. First of normalcy is tailored to the younger patients, we approach it a little differently, but each patient is individual and we just tailor it to how the patient is on the day. And I’m

 

12:54

and as a as a clinical nurse, what are some strategies that do you use to work with these patients and family, family members with needle phobia in specifically in terms of supporting them with stress management, with some of with reducing some of their anxieties, to getting buy in to get vaccinated? So can you talk about your communication, and some of the conversations that you have with these patients and caregivers regarding that?

 

13:25

Definitely. I mean, we want people to be empowered with knowledge before they come in, we don’t want them to say, and we never want them to feel that we’re pushing something on them. It’s their right always to refuse at any time if they don’t want anything, but we want to make sure that they have the full information, the full education, you know, we have information leaflets we can give to patients when we vaccinate. And like I said to you beforehand, the phone call that we have with the family or the patient beforehand where we can go through that what are your concerns? What questions do you have? How can I assist you in answering Let me tell you more about the vaccine that the child is having. Let me tell you more about what the left drawer involves. Just really i think that’s that’s the biggest part of it, it’s empowering them and making sure that they’re part of the decision making process that they’re really involved in have a good understanding that they’re not feeling well, I shouldn’t have this done, but I don’t really feel comfortable, we’re making sure that they really are involved and and really have that support to to understand what’s going on and to to really be be comfortable with that to really be you know, involved in the in the decision making process and really be educated to I think that’s a big part of it.

 

14:31

And in addition to the needle phobia, are there any other reasons why in addition to needle phobia or having a previously bad experience with vaccination, are there any other reasons why our patients or family caregivers are hesitant to get vaccination?

 

14:47

I think sometimes, you know, the media plays a big part in it definitely you know that, oh, the the MMR vaccine is bad or you know, the COVID vaccine isn’t real, but there’s a lot of media influence for people Definitely, that’s where we ask you to do you have any questions or concerns? Can we help answer any of these things? We haven’t had too many with the COVID vaccine. But you know, the media is negative about one thing positive, bad another. So I think that’s where a lot of the, a lot of the hesitation and misunderstanding does come from. So we want to alleviate those fears, we want to answer to the best of our capabilities. And, and like I said, we want them to make an informed choice. We want them don’t ever want someone to feel that we should have you must have this vaccine. It’s always their choice, but we want to empower them to understand to the best of our knowledge to really make a good informed decision.

 

15:36

And what are some resources that you provide to these families and patients who have needle phobia or, or even have vaccine hesitancy.

 

15:47

So like I said, we give different patients when we give vaccines, we have fact sheets for every single vaccination explains all about the vaccine, what side effects to look for. And also, the schedule of vaccines, because some of them are two series three series, we want them to know beforehand, that if you’re going to get that HPV, there’ll be a follow up shot in six months. If you get this vaccine, there’ll be another shot so that they don’t think it’s one and done. And that’s it. We want them to understand if their series of accidents. But definitely give them the fact sheets, let them have time to read them to don’t just hand them this, oh, let’s do the vaccine. It’s making sure that they read everything. Do you have any questions, any concerns? So yes, we have fact sheets for the COVID vaccine, we have information sheets for all the vaccines that we give.

 

16:30

And are these factories or information sheet more tailored to the age group of the patients or the disability of the patients? There,

 

16:39

it’s a general form for everybody. They haven’t been adapted for different patient populations. Um, so generally, it would be for the family or caregivers of patients, really, that they’re tailored towards. But we obviously want to make sure we’re talking to our patients that Do you understand what I’m giving you today? Do you have any questions about it? Absolutely.

 

17:02

And we want to hear your recommendations and suggestions for other healthcare providers who work with people with disabilities and their family, caregivers, but who do not have access to needle anxiety program at UCLA, and we want to hear your suggestions and recommendations for these health, primary primary health, health care workers.

 

17:25

So I think one of the biggest things I’ve learned is, is allowing lots of time, I think time is the most precious resource. It’s something we don’t always have in the clinic environment. But it’s it’s taking that time to really sit down with people and to, to not try and rush them. When you try and rush patients, they pick up on that. And they it makes them uncomfortable and understandably so. So when you are working with patients who do have need low anxiety, you want to relax them as much as possible, you want a nice, quiet environment, like I said, you it’s important, you don’t have your introduction sitting there, you don’t have your lab work sitting there, you want that sort of stuff away from the area, you want them to really relax beforehand, you want to kind of establish as much of a relationship as you can with the patient and their family. But just taking lots of time and knowing that this patient, it may take me 30 minutes to give a vaccine because we have had some patients who’ve come in for sedation who ultimately didn’t take the sedation, but we managed to do the vaccinations because we had them sit and relax. We took the time and we were successful in administering vaccines. It’s it’s not always possible, that would be the dream. But it’s it’s very much it’s very dependent on lots of time, lots of time and lots of patients, I would say.

 

18:34

And we’re coming to the end of the interview, and I have a few questions. One is, I understand that you haven’t had a lot of COVID-19 vaccination, patients who are in your clinic, but do you see a difference in the patient population who are getting COVID-19 vaccine or other types of vaccines? Um, so

 

18:55

definitely, I think for our special needs population, we haven’t seen too many yet for the COVID vaccine. But again, like you say, I think there’s not a lot of people aren’t aware of the service that we offer with a needle anxiety program. And I think it would be really nice if it was kind of rolled out to more clinics to it would really be helpful to have that resource or multiple places because right now we have people travel from Redondo from Santa Clarita, it would be nice to have clinics a little more local to them too. I definitely think it’s maybe not. It’s not as well known about yet, I think definitely. But it’s something that we’re we’re building on obviously patients come in to see a doctor quo, it’s something that they’re discussing it their, their, their, their appointments. So it’s definitely something we can improve on.

 

19:39

Great. And then one last question. We want to ask you and we want to be we want to ask you, is there anything that I haven’t asked you, but you think it’s really important for for us for the audience to know and share with the new diversion community about kneeling It and vaccination efforts

 

20:04

just kind of just putting the word out there that there are resources for patients who, who do have special needs or do have severe phobias that we can work with you to try and achieve getting people vaccinated if that is their wish, and it’s just get, I just wish more people knew we were able to reach out to more people definitely that’s, that’s our goal. And it’s really lovely when people come in, and they were able to give them their vaccines and do their lab work. Because it’s, you know, it can be very emotional for the parents to that the patient hasn’t had their loved one in years, they haven’t had their vaccines and now they’re catching up, it’s, it’s really lovely to feel that you’re making that difference. So it’s, it’s just you know, and letting people know that we we take the time, we want to work with them, we want to work with the whole family to get this, this down, we’re happy to talk to you to work with you to work with your schedule to try and accommodate you. So definitely it’s a it’s a real team effort.

 

20:57

And how do you how do people get access to the Nina anxiety program, since you mentioned that people come from various different parts of the state or parts of LA County.

 

21:07

So a lot of our doctors that come here, because we do urgent care in the evening. So a lot of the doctors that cover urgent care, go back to their practices in those locations, and then they reach out to me and so I have a patient, I think would be ideal for the need, like so it’s kind of a bit of word of mouth right now. So it would be nice to have something, you know, other than just word of mouth to put the word out there that this program does exist, but it is, you know, at first, we just had a few patients Now, every couple of weeks, I’ll get messages about more patients. So it’s when doctors come they learned about our program, and they spread it to their colleagues.

 

21:40

And if you have to think about a perfect world, or a world where there’s no restriction or constraints with money or time, what do you envision for this program and the future of this program?

 

21:56

So I think definitely, with more demand on this program, it would be nice to have more resources it does it is dependent on an RN, because an RN has to monitor the patient the whole time. So in a, you know, ideal world unlimited budget, you know, we would if we had an RN dedicated to doing this we could do so we could do a lot of patients a day, you know, if say we did an hour and a half each patient, we could see a number of patients every day to to be able to help in obviously in an ideal world and take that time to do everything we needed to. So it is yeah, that’s that would be my only consideration for different clinics as well. Is that it? Is it is time consuming for it’s an RN, that’s their sole role. So definitely it’s not all clinics have an RN full time. So that is one of the problems, one of the stumbling blocks, I’d

 

22:42

say. And based on that what you just mentioned, and what I’m hearing is that the time and resources resources, such as money, or Rn, are important for setting up a similar program in different clinics.

 

23:00

Absolutely, absolutely. And having the rooming space available. Because you know, a lot of clinics, we have 10 dedicated rooms, we also have our doctors doing primary care, we have infusion patients coming in, we have vaccine patients coming in. So it’s, you know, it’s nice if we could have a dedicated space to do this, then that would be you know, that room wouldn’t get used for anything else it would be that would be obviously in the ideal world. But that is something to definitely consider you need a dedicated space, dedicated staff, definitely, lots of time, it’s a very time, you know, it’s worth, you need to spend time with this patient population to be successful. So that’s very important to consider.

 

23:38

Great. And is there any training that you are providing as an RN as a as a team member in the new anxiety program to other clinics or other community members, other conditions?

 

23:50

Not at this time, no, ambulatory nursing, they come to do the do the assessment service and they signed us off which is their their protocol. But I would be happy to work with anybody who wants some advice and some, some just some assistance definitely with establishing the program because when we started it was it was kind of unknown. We didn’t there’s nowhere else that did it. So we’ve we’ve learned and we’ve like I said we’ve had some successes and some failures, but we’ve we’ve learned from both. So it’s definitely you know, I’m happy to be a resource for anybody to help establish more of these clinics will be fantastic.

 

24:24

Great, thank you so much candle. Is there anything else you’d like to add to your to the conversation we have had so far or you think that there is a question that I did not answer, but it’s really important for the audience to know. No, I think you covered a broad range of questions. No, I appreciated that. Great. Thank you so much for your time. If my team members have any questions, I want to open the room for them to ask. Otherwise, we will stop the recording

Pink graphic depciting the text On empowering patients about needles:
pink graphic depicting the text we want people to be empowered with knowledge making sure that they're part of the decision making process


Interview with Dr. Peay and Dr. Chipley

Dr. Khendra Peay, is a child and adolescent psychiatrist in Washington DC. She directs mental health programming at hood medicine and works on the steering committee to improve access to mental health care. Dr. Quintin Chipley is retired is a retired psychologist who formerly served as the counseling coordinator for the University of Louisville Health Sciences Center. His passion is focused on abstinence based peer support recovery, communities and transitional living for those in recovery from addiction. He currently serves on the board for beacon house, a local sober transitional living facility in Louisville, Kentucky, he steers mental health policy and programming initiatives for Hood Medicine.

We interviewed these two stakeholders to learn more about their involvement with Hood Medicine and how they work with the disability and neurodivergent community.

Fri, 6/18 7:29PM • 1:04:39

SUMMARY KEYWORDS

people, community, vaccine, impacted, important, medicine, vaccination, access, support, talking, frankly, families, reality, black, acknowledge, folks, person, louisville, vaccinated, medical

00:04

Hi everybody. My name is Lucia Juarez. I’m part of the COVID-19 vaccine hesitancy interview team and today I have the pleasure of interviewing Dr. Khendra Peay and Dr. Quintin Chipley. Welcome whether you’re free so I’ll first begin by introducing Dr. Khendra Peay, she is a child and adolescent psychiatrist in Washington DC. She obtained her BA in psychology from Wellesley College, where she also completed her pre medical education track, and an MD from Virginia Commonwealth University School of Medicine, Dr. Peay is an assembly representative for the Greater Washington region of the American Academy of Child and Adolescent Psychiatry. She has also practice in outpatient and inpatient clinical settings and consults for clinical training and community education programs. She directs mental health programming at hood medicine and works on the steering committee to improve access to access to Sorry, no problem. Mental health care, mental health care. Thank you. Dr. Quintin Chipley is retired is a retired psychologist who formerly served as the counseling coordinator for the University of Louisville Health Sciences Center. He earned a BA at Rice University and also holds a Master’s of divinity from South Eastern Theological Seminary. He earned his master’s in clinical psychology, his medical degree and his PhD from the University of Louisville. His passion is focused on abstinence based peer support recovery, communities and transitional living for those in recovery from addiction. He currently serves on the board for beacon house, a local sober transitional living facility in Louisville, Kentucky, he steers mental health policy and programming initiatives for Hood Medicine. Thank you both. Thank you both for being here. So I’ll be beginning I’ll jump into the questions. Either of you feel free to answer the questions. Thank you. Can you give a brief overview of what Hood Medicine is and what the goals of the program of your program and describe how your work with the disability and neurodivergent community?

 

02:56

Well, I will defer first if you don’t mind to Doctor Peay, mainly because she has a longer track record of history with some of the people who began but it’s a shame that we don’t have Dr. Sidney Hudson on because she has a patter spiel on this, which is really quite safe and very funny in some respects. But as she says, it’s the assembly of scientists, geeks and physicians and hackers, who are committed to bringing greater equity and health care to the underserved populations, particularly within the black and indigenous populations and Pacific Islanders. That was their typic navigate nation. And it was brought, I guess you’d say sparked, of course, by the COVID-19 crisis, because those communities were disproportionately affected both with morbidity and mortality. And also for having, they were disproportionately affected by the mental health issues which were secondary both to the direct impact of the disease and the disruption of social structures along the way, such as schooling and personal and work relationships. So there was a strong Nexus evidently of the organizers who all knew each other from times at MIT, or in  the Boston Cambridge area score. That’s about what I know about it Dr. Pay off interview.

 

04:57

I am new to work with Hood Medicine. But like Dr. Chipley said, I’ve known the organizers for years. But I was attracted to their work because of what they’ve been doing to increase education, awareness of comorbidities, and different health issues that are affecting communities that are underserved communities that typically don’t have the same access to care that we might see just otherwise, just from a societal standpoint. So my role outside of Hood Medicine is completely working with child and adolescent populations, and also psychiatric neuropsychiatric and no developmental disability. So their work in particular in targeting education and really getting awareness for there being more services, more awareness for the health needs being met for populations that otherwise don’t necessarily get acknowledged as being needing to be met with something that really drew me to to enjoy working with them.

 

05:58

Your team is made up of a variety of experts, including hackers. How would you say that holistic approach contributes to your mission and Hood Medicine?

 

06:08

I could say for myself, because I’m definitely not a hacker. I appreciate the global picture of the group. So I feel like it really mirrors what society looks like. And when we’re talking about treatment. And talking about community resources, in general, it’s really takes into account that it takes a community of different different strengths, different backgrounds, different things that we can all bring to the table for the same goal of really trying to improve our communities in general. And when I say committee, it’s like all of our communities.

 

06:39

I would say what I have observed and I too, and definitely, I’m way too old to be called a hacker. Okay, I do well to get my password correct and get into a program. But what I’ve observed is that the members and their friends, if they’ve recruited bring a fluency, with social media techniques. And with graphics, with the power of naming, of reading names that are going to be effective. They have, they have their finger on the pulse of a rising generation, which I only wish that I knew as well as I do. And so that’s, that’s been very important. But they really do understand that the digital arena that just saturate the population at this point, and I think that is one of the greatest strengths. As far as a holistic approach, because they see how those particular digital tendrils actually move into each one of this.

 

07:56

How will these expertise work together to accomplish this school?

 

08:04

From my enough to like, it really is because we’re all coming from such different backgrounds, we’re able to work in a congruent way, which is amazing. But we all come from really different backgrounds. I mean, my background is purely medical. So I don’t have a lot of when it comes to technology. And when it comes to marketing or when it comes to just a lot of the other areas that are even when it comes to me in their aspects of public health that have to do with just direct medicine I’m aware of but then we have people who are purely that is all they do is public health. So it’s exciting to work with people who we all have different training different backgrounds, which allow us to come in with different strengths, but to be able to work together. And really just with the same focus in mind of wanting to see better health, better health for our communities, better health for the country, just better health in general. And overall, not just mental health.

 

08:55

Yeah, I think that that is true. It’s the fact that there is strong representation from the very identified communities, the black communities, indigenous men, garner support. I personally am honored that I was asked to be part but because I don’t fit in those categories at all. And but it is, I do think quite frankly, that I one strength that I bring in and I hope that this comes across well. I am because I am from where time I was born, which was 1956 and where I was born in Memphis, Tennessee. I am inevitably a white privileged racist. Now I am also by choice and by exposure, a person who has chosen to become anti racist but that does not erase Your origin, it just means that I am able to recognize it and to help where I can within my community to say, look, we have our work to do. And this is not the bipac community’s job, it’s not their job to fix us. It’s our job to fix ourselves in this regard, and, and I can learn from the community of it within Hood, where my blind spots are along the way. And then we can also discover where there is a commonality where none of the origins actually matter where they are. And that’s, quite frankly, when you finally get down to the, to the, the methods and statistical analysis and the conclusions of the scientific study, it’s kind of like when you get down to the point where the numbers speak, then we all we can say, Okay, this is, you know, this is the common language, it’s almost like finding music, the common language to find the common language, in science. And so, but the, the variety is very important. So, I won’t belabor the point, but I think that is important. I do think it is very critical to have both the public health perspective and the, the medical practitioner perspective, because as much as we try to see each other’s world, we always have a slightly different focus, my focus is going to be on the person in the room with me. And the public health person is on the huge, large world beyond their walls, constantly. And so we can each bring to each other, that particular perspective, which helps remind us that not one perspective is going to encompass everything, that there is a parallax view, that must be in both in order to understand the greater trades that are happening.

 

12:22

Definitely

 

12:24

what has learned from you and your patients experiences from the covid 19 pandemic, in general, but also, particularly with respect to the neurodivergent community.

 

12:38

So I’d say the biggest piece of that really an appreciation, and no, just acceptance of the fact that this is truly has been a global pandemic. And that every, every person has been affected. And so when we talk about anything that is either challenging or things that affect what my relationship or what my interaction with the world is, that would have been impacted, just, of course, that inside the pandemic, but it being something across across socioeconomic status, across gender, across race, just in all areas. So that was the biggest piece of them first acknowledging that, that everybody’s affected no matter what, but then going into whatever disparities were happening before, whether it be a disparity in access to care, access to knowledge about care, those things were amplified to in terms of there being just a bigger, a bigger gap in terms of access to that information and access to that here, which led to as we saw a lot of disparities in terms of who was primarily impacted by the global pandemic, also, SAP the biggest, and that then goes on when we’re talking about divergent communities also impacted just the same as everyone else was impacted. But being when we’re talking about having any type of health condition, then it’s going to be an even greater impact. When you have something that now is another insult basically from from an immunological standpoint, but also just in terms of how it affected everything else, our access to socialization or access to support or access to coping skills that previously people would have had been able to easily move into. So an even bigger impact in that sense.

 

14:32

Well, first of all, when it comes to specific patients, by simple quirk of the calendar, I literally retired in January, about a month and a half before the pandemic was properly acknowledged and before restriction set in. So the reality is that I was already out of the clinical setting, so I didn’t have any Patient myself, I will say what I’ve observed is an interesting fact that and the second thing is I really have no specific experience with neuro divergence, I have thought a lot about the issue. And what is the impact of talking about vaccine after the wake of wake, you know, and all of the trope of equating vaccination, quote, causing autism. And it’s, it’s, you know, there, there are so many different ways in which that was wrong. First of all, it was it was fraudulent, fabricated, that’s been now proven. Secondly, if we had to really ask ourselves the question of, what do we mean by quote causing autism? What is it, people think that autism deserves, quote, a cause for I will say, my own experience as a human, it. I am a member of a community that has had struggles I’m a self identified gay man, although masculine by the patient, he can, etc. But I’m also familiar with the whole notions of the this mothering mother notions of causing gayness, which, of course, was completely ridiculous. You know, and, first of all, what, it’s not a cause it’s kind of like talking about any kind of characteristic of, you know, what caused me to be steps, but one, I don’t know. It’s like, and so I getting back to the main point of neurodivergent. And I suppose quite frankly, 1/5, consider sexual orientation to be a version of neurodivergent. Pregnancy, things are centered in the brain. There’s no doubt about that. So it strikes me that much of the neurodivergent community is burdened at this point, with this whole notion, whether they’re aware of it consciously or not, they’re going to be burdened with this notion of vaccine and identity. Whether it was right or earned are proper is a whole different matter. And it’s kind of interesting when you start thinking about the not exactly parallel, but with the black community having to struggle with the whole issue of medical apartheid. And in the history of knighted states practice of medicine, whether it’s a spectrum of gynecology, and the herb rendus experimentations, without Anastasia on non consenting, black women, or when you talk about the problems with SP gay, and even then later on the transference of that to the brown people down and Central America. It’s like so you have situations in which people have been hurt by medical malpractice. And now they’re faced with a situation where they’re having to gain trust. And, ay, ay ay, ay ay ay statement of medical rescue, medical health. And, and that’s, that’s quite a conundrum. It has been interesting to watch the fact that quite frankly,

 

19:13

within the black community in particular, they have proven themselves to be malleable and and changeable. But when you address the realities of what we know about this, these particular vaccines now for COVID, which are proven to be safe and effective, and and countering the issues about what really had happened to them and their community, or reality thing, not a not a conspiracy theory thing, you can move a person from, from an experience of true reality into true reality much more easily than you can move people from conspiracy theories into true reality. And that’s what’s been interesting to watch with the resistant, hyper conservative, white community, they are not moving very rapidly. But because we’re not arguing against saying, this is, you know this Yes, you’re right. That’s what the fact in the past and now, this is the fact of the President, it was a bad fact of the past, it’s a good fact, in the present, you’re having to take on the full argument of what your thinking is not founded in truth. And if odd, it sets up the conundrum? Well, I’ve always had did have the experience, one of the things that we were always taught was, you don’t confront a patient’s delusions directly. You just don’t. And so it’s very difficult to confront the delusions, and so we’ve had more success in actually confronting, and the neuro diverse community may find it to be similar, that you can acknowledge the state your this was an abuse of your identity in the past. And it is acknowledged as an abuse. And now we can move into a real reality now, which would be a benefit for your identity in the present. But that’s just a thought, that’s a hypothesis and it’s totally untested, it would be great if your, if your project can take that forward, and actually operationalize that, and put forward a testable hypothesis, one

 

21:38

COVID standpoint to is having to also take a step back and think about how scary it was for everybody. Like this was new to every single person. And as the medical community and public health, we’re trying to even figure out what this is what’s going on, how do we treat this who’s being impacted, this is all still impacting people simultaneously. So for anyone, this would have been anxiety producing for every single person, this was anxiety producing. So even if there wasn’t a prior diagnosis of anxiety, or a prior diagnosis of, let’s say, depression, this is something that elicited responses that were really natural responses, but work, again, we didn’t have access, because of the nature of this disease, we didn’t have access to things that would, for any community be able to at least decrease necessarily the severity of symptoms. So this was all something I’d say going on simultaneously to separate from the fact of how it was impacting some communities more than that just means we’re talking an amplified effect for communities who already had pre existing it concerns pre existing illnesses. And also we talked about, again, bipoc community, there being already an established disparity in access to health care and access to information about that health care, while the entire country and world is undergoing this novel situation as a body producing for every single person.

 

23:06

So that the, what you mentioned about folks who already had experienced disparities, and now you have this COVID vaccine coming out a lot of programs and organizations having to pivot to go online full mode, without maybe not necessarily having the tools or the know how to how to do it. But yet, here we are, right in June 2021, in a completely different remote world, where we’re able to have this conversation on zoom on different time settings. So there there are some really good things coming out of it. And in some ways, but also I hear what you’re saying about treating people with dignity and validating their experiences, right that like, yes, it’s true, this is what actually happened, and not making it seem like it didn’t happen or that those things are in the past. Like, no, they’re very real. And I think that starting from that perspective really helps establish that trust and that connection that you’re going to need to move from the potential hesitancy that they may be experiencing to further like, so what does that look like? And how, as a medical professional, can I support you work through those questions that you have?

 

24:11

This is exactly because it is valid. It’s a valid worry. And on my end, in my specialty, my goal is to make sure that things like anxiety, depression, ADHD don’t basically become the decision maker like that is not the thing that impacts the decision for different things. I always want to encourage families to have an active communication, ask all questions of their primary care providers. But on my end, I want to make sure that at least the anxiety is not the thing that’s making the decision for them, as opposed to a truly being an informed decision. Because there’s a lot of reason for anxiety to basically come to the forefront and be something that could make decisions.

 

24:52

I have told patients before science before that, particularly ones with depression One of the things that we know about depression is that one of the first symptoms is it takes away your ability to take pleasure, and, or to have motivation in the things that you normally would. So if I tell them I said, your favorite thing in the world could jump up off the floor and stop you in the face, and you wouldn’t know it, you wouldn’t know what’s happening. So. So remember, get some people to help you with your thinking in this regard. You know, don’t consider yourself invalid. But don’t, don’t hesitate to reach out to help others to do reality testing with other people along the way, because your your, you know, your disease, can can actually cripple you. One of the things that’s a little bit of a paradoxical treatment is to basically say, you know, what, that’s the medical system, failed your people in the past royally. Don’t let that happen to you twice. This time grab hold of what’s being offered to you, that’s actually real and helpful. Don’t let the Don’t let the past by to twice, it bits you wants, don’t let the past bite you, again, don’t let the past block you, from what should be rightfully yours, which is the openness to a safe and healthy. And that can sometimes muster up a little bit of, you know, you’re right. You know, it’s, I can’t let them, you know, they knocked us down, but we can’t let them keep us down. We have to move forward. I think that’s

 

26:50

the that’s not the word goodness, that they acknowledge that they bring it to the forefront. And they provide folks with the tools to advocate for themselves where ever they are at. So what are some reasons that you think have facilitated individuals or families who choose to receive the COVID-19 vaccine? I know, you mentioned that depression could act as a potential barrier, or that other folks could have developed different mental health conditions that could potentially fog, you know, the reasons why they may or may not get the COVID-19 vaccine. What are some reasons that you have seen that folks do get the COVID-19 vaccine?

 

27:32

I would say those are actually also some of the same reasons that people have been getting the vaccine is really an awareness of anytime we’re talking about having any comorbid diagnosis diagnoses, that puts you at a higher risk of how significant and how severe the impact is, from COVID-19. So I spend a large decision maker for a lot of people is that piece, and then the other piece also of wanting to get to a life of some degree of normalcy, and doing anything to move in that direction. But initially, I’d say a lot of it was also just knowing there were other medical issues and other things. And that playing a part or so in terms of how people were impacted from the from just how COVID-19 led to further health issues, even for the families who were able to survive it.

 

28:24

Yeah, and now I don’t have any direct experience in doing this. I will borrow from a pediatrician from Indianapolis, who was speaking with us a couple of weeks ago. And, and he will tell, and he’s had success with, as he said, with his families who were resistant, because they were afraid of the side effects of the vaccine. And he would say, well, dude, do Pampers. Now, of course, Pampers is the brand brand name, the trade name for the disposable diapers, if they do Pampers cause brain cancer and toddlers. And the parents will say, well, that’s ridiculous. And then it’s a well, he says, All these all these kids who are three years old who are diagnosed with brain cancer. Were were in Pampers when they were infants. And they will say, well, that just you know, and then they can start thinking for themselves, the way that we think about covariance artistics, about the fact that everybody wore Pampers. And that there was that just because there was temporality involved. There wasn’t causality involved, and that people can start seeing that. And, but he only goes at that after acknowledging the fact that he understands that they have strong concerns about the long term safety and They’re the health of the children. He understands that and to affirm that, and the parent is particularly important to say, you know, I’m not going to diss your your concern for your kids, you know. But now let’s think about how we can actually visualize this and think about that in the in the best terms possible. And the pediatrician reporting that he can gain their trust quite well, because he’s, he’s, he was quite often he is himself a black man. And he’s his population, and he population is primarily black. And so he has a rapport that that afforded to him, that probably wouldn’t come off as well, if I were to try the same thing. And so having the right person say the right thing at the right time is going to be very important. And I can’t assume that just because I’m right about something that I’m the right one, say it.

 

31:01

Your representation matters and delivery of the message matters. Something you mentioned earlier was how folks have a lot of hesitancy around vaccinations, making either assumptions or correlations or causation arguments between autism and vaccines. And that’s one example of a barrier, right? What are some other additional reasons that folks or families may not receive the COVID-19 vaccine that you all have seen or have observed as colleagues or with your own patients?

 

31:38

merely fear. It’s new, and it’s unknown, which I understand. One thing I’m going to add to in terms of things that reasons as to why people happen. Getting the vaccine also is for family and for community, people wanting to make sure that they didn’t increase the risk of elder members in their family being infected, elder members of their community being infected, or individuals with increased health vulnerabilities being infected. So that actually being another reason as to why people have really been open to getting the vaccine, really thinking about other people that they did not want to be infected. But no primary reason fear. Now, in terms of like medical providers, we’ve been quicker to get it in terms of physicians, because that is the place we’re coming from is that we want to make sure that we don’t put ourselves in position that we would get anyone else sick, or get anyone else infected. And that’s where you had so many health providers who weren’t seeing their families for extended periods of time, during really the thick of the pandemic or you know, just not being able to be around other people outside of who was ever in the bubble, similar to what we’re talking, you know, just for everybody, that just also from in terms of immediate people because of not wanting to infect, but fears really been the biggest it is it’s an it was an unknown. And it took a while for there to be enough information disseminated for people to really understand what not only the virus truly was, but also what we were talking in terms of the vaccine, and that this wasn’t something that had just now been developed, really, it being something that had been in the works for decades, prior to it being something that then this was now just now we had a time to basically quickly get use of it. But it was not a novel development. But that took a long time for people. And then there’s still people who don’t necessarily know that which again, goes to, you know, just access to information and dissemination of information and making sure when people are making informed decisions, that they’re truly making fully informed decision.

 

33:43

I would say that, well, first of all, I’m in Louisville, Kentucky, and surprisingly enough, Kentucky had a very progressive and advanced response with provision of vaccine opportunities compared to what you would find some of our neighboring states, particularly when you compare it to this was early, it was organized better. It was a top down organization that enlisted local bodies. Well. So that was that was very good. So what that meant was that opportunity for vaccination actually was read pretty quickly within our communities in particular around Louisville quite well, very quickly, but that that’s not uniform across all avoidable. There are certain sections of loibl that are particularly underrepresented. Of course, if this is not a matter of providers offices, this is because these vaccines were not being distributed in providers offices. They were being distributed either in municipal centers are in pharmacy locations. But there is definitely there are neighborhoods here that are pharmacy deserts. Where and, and those are also the same neighborhoods where people don’t have independent vehicles, individual vehicles, the way they are, you know, they’re quite dependent upon bus lines and the bus lines are mediocre at best. You also have people who were, they did not have the flexibility for the most part of working from home, if they were working. And so they were, they were having to negotiate other kinds of realities. And by the time you take all of these different variables in the regression equation, and knew, you know, then and then also match the variable with the appropriate coefficient along the way, you’re going to, you’re going to strike the y axis as a slightly different place, and you are for the, for our privileged Easton community. And so some didn’t have the ease of being able to get onto the internet and to book their appointments very quickly, when they were first available. And, and they didn’t have the ease of being able to take off from work to and to have their own car because these were mostly drive thru vaccinations. So you had to be able to drive through, so you had to have someone fake, you didn’t own a car, or you had to borrow somebody’s car, if you could, or things like this, it wasn’t like you could walk up, it’s almost like, people tried to do walk up to ATMs at banks, and they actually get punished for it. Along the way, they’re not supposed to do that, you know, you’re supposed to be in a car, kind of thing. And so and so there were there were other socio economic variables that were at play. I will say that, quite frankly, we are at a point right now. Where if someone decides that they want a vaccine, they can pretty much get it with without a huge number of barriers in front of them here in the middle of June, that things have loosened up over the last six to eight weeks, considerably in that regard. But this is not true for all of our regions. Not true for all of our states.

 

37:40

We hit on such a great point that there’s a lot of fire preexisting condition conditions that are structural, like folks not being able to take time off from work not having transportation, not having a, you know, the it like internet or something fascinating that you mentioned was pharmacy deserts write that they don’t even have access to proper medical, not necessarily medical care, but the the medicine themselves to cure them. So now you’re talking about another added layer of health with this COVID-19 that vaccine that we’re all shifting and pivoting to try to figure out how we can support all populations, but also the most vulnerable folks. So in what ways Would you say that, as physicians you have, or as just individuals in the medical field, you have supported families in assisting to receive the vaccine. So you mentioned that now it’s a little bit more easier. How, for example, for folks who have limited access to make an appointment, in what ways have those barriers been mitigated or ameliorated to support access to that vaccine.

 

38:51

For me, just making sure that it that they have access to information as to where they can obtain and where might be a place local. At the end of the day, I still leave it to the family, it’s their individual decision while I’m getting it. So I still encourage just them having information so that they’re making an informed decision on you know, if this would be a benefit, and why this would be a benefit, but increasing that trust in their primary care. But once we’re at that place, just making sure that they’re aware of the places that can and it’s just like Dr. trip we said there’s access added benefit of being in an area that it has a lot of access. Now. There was not that access last year so much but in terms of there being mobile vaccine clinics, even not just the pharmacies, but literally who kind of go down most streets and get it the health departments have set up a lot of different locations. So there’s there is more access now. Especially now that they’ve opened it up to children well to teenagers. There’s even more at is available then there even was when it was just adult. So just making sure to at least they’re aware of those places and options, but families are finding it.

 

40:09

Yes. And around loibl I know that there was that the health department in conjunction with some of the large hospital corporations really work together. Well, they did some pop up, drive throughs pop up walk in trailer vaccination in some of the more poorly acts, access communities, the black communities, the brown communities, I believe now, don’t I, I’m going to go out on a limb and say this, I think they even set up one at the Churchill Downs of the back backside of the track, because that’s a, that’s a heavy with tenex. population. The track workers are, you know, they were able to, to meet the community where they were found. And so and using that the traditional black churches was one of the strong avenues from here, although even the black church leaders would say, Well, yes, we can get the old people. But the young people don’t come to church. We don’t know how to get them, you know, and so but they, they were, you know, we, we did see that to be an effective way to help, it’s still not quite the same thing. It’s having the Kroger pharmacy, or having the CVS and the Walgreens, which right now all have the signs up saying walk in, you know, COVID vaccinations are available, the problem is you got to be able to get to that location to walk in, and they’re all more than two miles away from most people’s home. So that there is still the hope. It’s, it’s, I mean, the modeling of the math modeling of that is the modeling that goes along with fluid dynamics, that you’re always going to find greater flow along the easiest path. And, and so therefore, you’re privileged, it gets privilege, unfortunately, without any consciousness to it. It’s just simply a privilege to get the privilege.

 

42:29

One thing that’s nice that and this speaks to what Dr. ship was saying, there’s been a nice shift to access to areas that are known to everybody. So before it was at a point where it was like you had to figure out where this place was or where this person is, there’s really been a shift to it now being available, where you can get the vaccine at a massive like a mass area that everyone knows to the public transport, transportations able to get to put locations that everybody knows. So that that increases the chance in likelihood of more people having access to getting vaccinated.

 

43:04

I definitely hear what you’re saying it’s visibility establishment and the partnership with well known organizations that already have the trust of the community and leveraging that to support the COVID-19 rollout. You also mentioned information and I’m wondering, what methods do you use to provide correct information or facts regarding the COVID-19 vaccine?

 

43:26

I do like this bill refer to the tried and true CDC because they are technically dictating our steps. So I do reference there but also reference other organizations like NIH, just places that I know, you know, we’re doing either research in different areas. But the first place I always recommend families to go to is and I know I said it, but it’s true. I recommend that their primary care because at the end of the day that their central person who’s managing just from a central aspect, their care specialist, we come in and we support and we do everything we can do to make sure that health is in a good place. But there’s still that central person for them too. So that’s always my primary that I refer them to go back to the CDC. Yeah, because right now that’s that’s what that’s where we’re all getting our information and who Yeah, but not Cz.

 

44:19

Yeah, and now click medicine initiative in particular. Of course, it’s its website, as a very important source for both posting sources outside but also posting its own infographics. And they’ve done I think, quite frankly, a very good job of they are very simplified, but they are accurate infographics about both the pathophysiology of the disease, the thing and also trying to dispel myths about the vaccination Even the do a little preaching here and there about, you know what to watch out where you go for the clubs and stuff of this nature. So that’s been important now. And they also will repost interviews, which that they participate in from the serious news broadcast that’s hosted out of Los Angeles, the name now is blanking on but it’s tremendous theory, Sirius radio broadcasts. They’ve been on, I think three times now that they, but it’s been enabled, they have a strong YouTube presence. With the interviews with forthwith even with Dr. Peter Hotez and others that’s been very important. You know, and bringing up up to the minute is as much as possible accurate information. And when things are ambiguous, allowing that to be a staple thing, you know, this is not exactly certain right now. And not trying to gloss over that. And, and also to not gloss over the fact that science sometimes has to change on a time when when data comes across different. Now move to a different thing here locally, in the in the the traditional black neighborhood areas of Louisville, they are billboarding probax vaccination signs, and this is not that Madison’s doing this, and I’m not exactly sure which organization is funding this, I think it’s coming out of the health department or grant, they’ve got to deal with this. But it is specifically targeting those neighborhoods, really encouraging vaccination and saying things such as herd immunity needs you. You know, sort of, you know, herd immunity for the hood, you are important and showing an almost tantalizing people with pictures of basketball arenas, we have a very important big basketball arena here, which quite often use now for the Final Four, and they’ll show it full and it’s basically kind of like saying, you know, you need to be vaccinated with the idea that if we all get vaccinated, we can get back to here. And you can you can bait a lot of people with basketball and Kentucky, let me tell you that’s, that’s like religion here. So it’s, it’s, I’ve been quite impressed with the fact that they really have, you know, been targeting targeting the underserved communities in this regard. Yeah, absolutely.

 

48:12

What you mentioned about following CDC guidelines is really important, because as we’ve seen throughout the year, things have been changing, sometimes from day to day, week to week, month to month, and it’s just a lot of change. And often for people, I mean, just change can be really hard to move with, however, knowing that there is a trusted website, like the CDC, or I think you mentioned the NIH, that that those are trusted sources that folks could go to. But I think that Hood medicine does such a great job, like you mentioned of creating infographics that are attractive, that are digestible, because sometimes these websites can have very lengthy language that may be just, you know, just regular people who just want to see a quick and fast won’t be able to access or understand. And it’s and it’s Yeah, and so the job or that the workup had medicine is really impactful in that way. I also I wanted to ask you, in what ways would you say you counsel our support patients of color folks who, from the disabled communities who are hesitant about receiving the COVID-19 vaccine, what has worked best and what hasn’t worked as well

 

49:22

as start from where they’re coming from? So no, you know, what is the core? What’s the core behind your decision and your fear and your thoughts? Because even when we’re talking about you know, what bipap community is still going to be individual decision at the end of the day also. So it’s really starting with Okay, what is it for you as an individual that makes you hesitant? What is it for you that makes you feel like this is not something that you can trust and then we work from there to see what parts of that are based in science, what parts are based on information, what parts are based in actual reality, what parts are Based in my anxiety is just purely and I have no I’m not basing it on any information or anything that I’ve read or heard. It’s just purely based on fear. So then once we determine what’s really behind that thought and that hesitancy, then that’s when we’re able to get to, okay, let’s, let’s take the layers down, so that we can truly make sure it’s a well informed decision. Because if it is something, let’s say not based on truly being informed, and we, then we work on getting informed, so that it can truly be a decision. That’s okay. Now, if I am deciding this, then at least I’ve taken to account all these other things. Or if I’m getting information, am I getting information from appropriate sources? Or am I getting information from opinion pieces, because that is not necessarily going to be fact base? So that’s the other piece too. And then making sure our is the information, we’re getting fact based information? Because I definitely work from a world effects. And but then also, if it is anxiety, and that being the primary or depression or something like that, then we work to reduce those symptoms, because then that wouldn’t just be impacting that decision. It’s impacting all decision making,

 

51:10

right? It’s correct. Yeah. And I would say to that, um, well, I don’t, once again, I’m not going to say that I have direct experience, or any measure of experience of what worked, what didn’t, I have heard some anecdotes from the people. We, for instance, Hood Medicine did have an interview in which we had a woman who is PhD, MD, faculty, black epidemiologist, and one of the nice things was that she talked about her initial hesitancy when they were starting to roll out the vaccine in the fall. And because, and quite frankly, I, I’m one who was known for this, too. I kept saying last year in August, I said, I will believe it when I say it, because I said I know a little bit about coronaviruses, and they don’t behave well. And, and of course, my training and in neurology was is ancient, it was in the middle 90s. And there was no knowledge of mRNA technology. At that time, everything was it’s going to be a protein attachment face. And, and so I just put like, very, very skeptical, at first, about all of this. And But getting back to the main point, this particular scientist was able to say that she was skeptical. And so what did she do, she went and downloaded all the articles. Now, she wasn’t saying to the patient, that they need to go read all those articles. She’s basically saying, I know how to read all those articles. And I read them all. And she says, I was amazed. She says this was good stuff, you know. And then they went in, and she was able to talk about Yes, like this came about quickly. But that’s because they put the money in it to allow it to be quick, they didn’t have to wait for this lag time between phase one, phase two and phase three, they had enough money that you could just have them be seamless, moving one to another, you could start planning the logistics for phase three, even while you were doing phase one, which is not something that’s normally available for any kind of vaccine development. So she was able to lay it out there saying, I was convinced I had this training. I am a black person, I understand our history. And I was able to go into this and I was able to become convinced. And I think that that is the thing that is going to be most persuasive is to be able to say no. And and to not to not tell people that they are silly or foolish for being reticent to say I understand exactly where your reticence coming from

 

54:06

Yes. To what you’re describing, also with her experience that really speaks to how you’re going to have different individuals that are going to respond to different things really is going to have to be that they have to get all of the facts and all of that information and really feel like okay, this is coming from an informed place may have other people who it needs to be that they see more people they know getting the vaccine, yes, they were fine and that they did okay. And that being something that gives them enough reassurance. And then for other people seeing people that they respect, even if it’s not someone they know personally, people they respect or hearing someone that they trust what their words are to be someone who’s saying, look, this is I was okay or this was okay. But it really has to be for that person really determining what is what is it for them that would be something to reduce their particular hesitancy

 

54:58

sharing our own personal stories. Whether it be from a famous basketball player to your neighbor, or some important family member, teacher, community figure who can really support lessen the vaccine hesitancy, I also heard you say agency support, like validating, again, a lot of validation of a lot of supporting the person’s on decision that they can or cannot and when they’re ready, as opposed to imposing something on on a person. And I, I also heard you say that people should be making the most informed decision. And that’s it through making the most informed decision, they can better just decide for themselves. And I think with a lot of, I know, what put me at medicine puts out information on YouTube. But I also know that YouTube is a platform for so many people and organizations to put out whatever information they want. And that’s the other really scary I think sometimes it’s Flipside to that, that we do live in a world where there’s a lot of access to resources, and those resources may not always be vetted. I’m wondering in what way do you all help your patients feel more confident or empowered in getting vaccinated give him that there’s so many different just ways of perceiving that information? Or just with the lot of like changes that are happening? How do you ensure that your patients who are getting the vaccine feel that it’s safe and effective for them?

 

56:34

So for me, I just encourage transparency, and I encourage them to know that every time we talk if an honest place and an honest space to be able to talk about any concerns, questions, any doubts, any fears, any of those things. And even if it’s not something that I would address from a my specialty standpoint, then it’s at least something where I can make sure who what professional do they need to speak to, to provide more reassurance in that area. But it being something really just making sure that they have a space where they can be heard, in terms of any of those fears, and thoughts and worries and hesitancy because I think to just pretend that there are no hesitancies or worries are not validated. That’s when it just builds up and builds up and turns into its own thing, as opposed to acknowledging it, respecting it, but then working on it.

 

57:24

And I would also, I mean, this sounds a little trivial, but I think it’s very important to acknowledge the normal side effects of the vaccinations, particularly on the second dose, if there was a two dose regimen. And to let people you don’t have we don’t have to overplay that. But say, yes, you’re probably going to feel kind of lousy for a day or two. And that’s all right. That’s, that means it’s working. Now, not everyone does. And that doesn’t mean it’s not working for them. But say, you know, that’s, that’s just what we expect, you know, along the way. You know, and to contextualize it. In that regard. Most people don’t realize that they’re, you know, when they get the childhood vaccinations, the kid probably felt lousy. You know, it’s just that they, all they knew I had to do was pray about it quite a bit, you know, but so, just being truthful about that, and saying that, that’s okay. That’s just one of the things that happens along the way. And you’ll get over it, and you’ll be better for it. My personal experience was at the shingrix vaccination, particularly the second shot was a whole lot more debilitating, than the second chatter. The merge journal was part of me. But I knew that in advance, you know, I kind of scheduled a weekend off and, you know, that was, that was gonna be it.

 

59:08

I definitely hear what you’re saying about normalizing not only the fear around getting the COVID-19 vaccine, but also the side effects of getting the COVID-19 vaccine and with that, supporting the person, the individual is able to create a plan for themselves, like maybe have their own snacks or their own self care kit that they know they can get through the next one or two days or three days for some folks. Right. So I think that absolutely normalizing that fear and the aftercare that you’re going to need because it is it is a vaccine that may or may not impact your body in a different way. But creating that plan can really support individuals prepare ahead of time to know what can potentially happen and maybe in that way, so lessening that fear that comes with getting something new, an injection of vaccine in your body. So thank you so much. Thank you both for you. Time. There’s one last question, is there anything that I haven’t asked that you would, that you think is important to share that you would like to share with the neurodivergent? community?

 

1:00:12

Amazing questions. Just I can feel, the only thing from my end is just that I mean, we’re all every single person is experiencing this, every single person, we’re all experiencing this together, and everyone is going to have a different experience with it. And then includes when we’re talking about having a divergence, like there’s going to be just because we are all individually, there’s going to be different experiences with this. But this is a really important time to make sure that all health is managed during this time. So that means anything that was a concern prior to the pandemic, to make sure that that is taken care of during this time also, but also making sure like any decisions on the vaccine are back base and informed and really making sure you’re coming at the decision from a place of truly thinking of the consequences of not getting the vaccine awesome, because a lot of times we the fear can be of what’s going to happen in that immediate time of the vaccine. But there’s the reason the vaccine is even a discussion Peters because of the reality of what can happen long term. And what can happen even in months out without the vaccine. So really, that being a part of decision making to what do I want my life to look like, in five years? One year, one month?

 

1:01:30

Yeah, I would say to, to the neurodivergent community is claim your heroes. Quite frankly, I would not have the life that I have right now. If it were not for Alan Turing out who was the person who created the actually this human mechanized computational machine that broke the Enigma code, which allowed, quite frankly, the Allied forces to defeat the Nazis in World War Two. And not only was he a gay man, and partly mistreated for that part by by his own country later, but but he was neurodivergent. Probably represented on the spectrum. And the reality is, he’s saved millions and millions of lives and save at least a partially just way of trying to live in the world. I won’t say completely just right when we’re not there yet. But he definitely. So claim, claim your heroes, and know that when you choose to be vaccinated, to put yourself into a position, perhaps being the next hearing.

 

1:03:01

Thank you. So both of you for your time, we really appreciate you taking the time out of your days to speak with us a little bit more about COVID-19 vaccine hesitancy, the amazing work that Hood Medicine is doing, and just how we could all better support the neurodivergent communities. You now have access to the COVID vaccine and beyond. So thank you so much. Thank you both for your time. Thank you. Best of luck with the project.

1:03:34

Thank you so much for your time. This was wonderful. We really appreciate it. Thank you.

 

1:03:39

Thanks for having us. These were great questions. This was exciting. A wonderful job. Thank you. All right. Well,

 

1:03:49

thank you so much. And we will we will definitely be in touch with you about some of our next steps for the project. And we’d love to kind of continue to keep an open dialogue about how we can maximize our impact. Yeah, so

 

1:04:01

I will be looking forward to you guys being the ones who get the real data. I’m, I’m sort of, for lack of a better word, data flat. I really want you to know, and you will be able to listen science behind things which I hope are correct opinions. Anyway, thank you.

 

1:04:28

All right. Well, have a great night. I know it’s late for you on the east coast. Thank you so much. Thank you. Thank you. Bye.