Military Children, Health, and Research: Dr. Judith Palfrey, Boston Children’s Hospital

By Adem Lewis / in , , , , , , , , , , , , , , , , , /

>>Dr. Judy Palfrey: I’m Dr. Judy Palfrey. I’m a pediatrician at the
Boston Children’s Hospital. Well, the Boston Children’s Hospital
has the mission to provide excellent health care for children and to be sure
that we do our job until every child is well. So, for years, I have been working with
children with special health care needs and have been very interested in the way that
we provide services — not alone in the health sector, but also in the community. That would be in early
intervention schools and so forth. Because we know that children who have
special health care needs have a vast variety of issues that their
families need to deal with. And we have to provide those
through the community resources. So this particular project has to
do with military connected families. And obviously, our military service men
and women are doing enormous duty for our country in protecting all of us, but
oftentimes, they have to be away from their families if they’re
deployed, if they’re moving. And we know that children with special
health care needs have so many issues that come up on a daily basis, it must be a
double burden for families who may be being deployed and
serving us in the military. So the questions have come up: Are the
families receiving the same kind of supports that they need? And it turns out that the
military does wonderful things. They have the exceptional
military program and so forth. But what this conference is
about is trying to find the gaps, trying to find the things that are
maybe not happening in the military, and then also trying to find the services
that are going well in the military that the civilians could learn about. So I’m delighted to have been
able to be part of this program. You know, what’s nice about having this
program at NICHD is that the focus is on research, it’s on finding out new
answers to the questions that we may have. And yes, there are a
number of things that I think, even so far in the program
that we’ve been learning about. The military obviously has ways in which a
family, while they’re in particular base or they’re in one setting with let’s
say they’re training or what not. There are many services there
because it’s already a community. But what happens when
that family has to split up? The one member has to
be deployed, et cetera, et cetera. So, I think one of the biggest questions
that we have coming through this program is, how do you maintain the continuity of
services for families who may have a child with special health care needs? And does it make sense for the families
who actually want to be making the changes? In other words, for their career moves, it
may be important to move from one place to another. So that’s a tension that
we’ve kind of heard today. And one of the research questions that’s
come up is, could we be using 21st century technologies? Could we be using our communications
efforts to allow families to move around, but also have the services that
the children desperately need? So that’s one type of
question that’s come out. You know, this last couple of months,
I’ve been doing some work in editing a book that we wrote quite some time ago,
but it’s very relevant to what we’re doing now. This is a book about the services that
children with very complex medical needs need to have in school so that
they can go to school safely. It’s just — it’s called Guidelines for
Care for School Personnel for Kids Who Are Assisted by Medical Technology. And I was just thinking back —
the beginnings of that project. I was known for caring about kids with
special health care needs, and caring about schools, and so forth. And one day, I got a phone call, and it
was a school superintendent, and he said, “I don’t know what to do. We have this family who’s here. They have a child, and the
child has a tracheostomy, she’s got a hole in her neck,
and she’s got a gastrostomy. She’s 4 years old, and the family
says they want her to come to school. And I’m scared to death, basically. I’ve already had 80 meetings to try and
figure out if this kid can/can’t come to school.” And so I said, “Well, I’ll come
out, and we’ll talk, and we’ll help.” Well, out of that grew this
project called Project School Care. Where people would
always sort of home care, but this was school care. So the child — the law of land says
the child should be able to go to school. So we worked through and were
able to bring that child to school. But out of that came a whole project to
develop guidelines for other children to attend school whether they had a
tracheostomy or a gastrostomy, whether they were having cancer therapy,
whether they were having severe diabetes, whatever. And we’re now in the process of the third
edition of that book, and it’s teaching nurses and doctors and so forth — and
educators — how kids can just come to school and be part of the community. Well, you know, we just
had this wonderful panel. You’ll probably be
talking to some of the parents. There were two things that came out, and
I would very much underscore these two things as advice for parents. The first is, ask for help. Never hesitate to ask for help. It makes all the difference in the world. You don’t have to shoulder
anything 100 percent yourself. And military folks are, you know, they’re
trained to be independent, and they’re trained to take everything on. But when you have a really serious problem
with a child with special health care needs, you need
everybody: you need grandma, you need your pastor, you need the
people in the school to understand, you need friends. So ask for help. It’s there, and people will give it. And then the second thing that again I
underscore is, look at the optimistic side. You’ll be told about the dangers,
you’ll be told about the risks, you’ll be told about all the
things that could go wrong. But have an image of
what’s going to go right. And think about the
positive sides and the strengths. Because more than — you know, sometimes
things don’t go as well as you’d like, but more often than not, the end of the
story’s going to be pretty good. So have that image in
your mind at all times. You know, my career has been devoted
to walking outside of the clinical arena. And I still feel that’s a really
important thing for clinical people to do. Go visit the school. Go walk in the neighborhood. Go talk to people. Because we make a lot of pronouncements
about things that should be done, but have no idea what really can be done. So that’s why I think conferences
like this are so important, where you’re, you know, mess it up with people that are
maybe a little out of your comfort zone. Be questioned about what’s going on. Don’t take everything for granted. But particularly in the realm of
kids with special health care needs, so much of it is, what’s their life like? What’s their family life like? What’s their school life like? So for clinicians, I think, spend a little
time being curious about what goes on in the community. You know, everybody’s a little different
and got a little special something or another. That’s what makes us fun. That’s what makes life, life. And so, with families who have
children with special health care needs, the kids themselves — sure
they’re a little different. But learn about them. Get to know them as
human beings, as people. And then fall in love with them, because
you’re going to include and you’re going to learn their strengths. Well, I’m very grateful to the NICHD and
to the HSC Foundation for putting together this wonderful program. It’s bringing together people from
all different aspects of our country. And I think being able to, in any way,
support and help our military families is just an honor. So, I’m very, very
grateful to be part of this.

Leave a Reply

Your email address will not be published. Required fields are marked *