A positioning stroller can be liberating for a family
whose child needs significant postural support.
These strollers, however, aren’t always embraced
by parents who had been envisioning cute little strollers
commonly seen on baby shower lists.

We asked a positioning stroller manufacturer, a seating
clinician, and an ATP supplier how they work with parents
who balk at positioning strollers.

The Manufacturer’s Perspective

Josh Tucker is the National Sales Manager for Leggero.

“The most common thing I hear from parents is they
want their child to have the seating and positioning of
a wheelchair, but without the ‘wheelchair’ look,’” Tucker
said. “For parents, the aesthetics are important. We all
want our children to roll around in equipment that looks
like a stroller, if they can.”

But while manufacturers have to please many stakeholders,
Tucker said, “Clinicians are such an important
part of our industry. They interact with the parents more
than any of us and know the child’s capabilities and
limitations. My personal experience: Always go with the
therapist.

“At the end of the day, the goal is to do what’s best
for the child, not what looks the best. We need to hear
and understand Mom and Dad’s wants, but if an ATP,
a therapist and a sales rep are involved, then there are
obviously some needs that have to be addressed.”

The Clinician’s Perspective

Andrina Sabet, PT, ATP, is Director of the seating clinic
at Cleveland Clinic Children’s Hospital for Rehabilitation
and is the owner of Mobility Matters LLC.

“I try to employ the ICF model [International
Classification of Functioning, Disability & Health] in
working with families on any kind of equipment that
impacts their positioning and mobility needs,” Sabet
said. “I think that model creates an opportunity for a
landscape view because it looks at the interaction of the
child’s body, structure and function. But it also takes into
account their activities, their participation, their particular
environment, their personal family factors. It brings
everything together under one umbrella.”

Sabet said she prefers to start by talking generally
about a family’s goals or preferences. “I try not to start
with equipment when I look for equipment,” she noted.
“A lot of times, a family can come in and say, ‘I want that
stroller’ or ‘I want that
wheelchair.’ I think
it’s pretty cool to step
back and discuss
goals that aren’t
really related to one
particular piece of
equipment on the
market. Some examples
of goals might be
‘It can be accommodated
in the trunk of
my car,’ or ‘The child
can sit all day at the zoo,’ or ‘We can use it on the bus.’

“So instead of looking at things that are product
specific, we look at what the equipment needs to
accomplish. When I can start with families from that
perspective, we really just have a good discussion about
goals, and we save talking about products until the very
end of the discussion. It gives us an opportunity to come
to a better consensus of what the needs are. And it tends
to get better results in the end.”

The ATP Supplier’s Perspective

David Butcher, ATP, CRTS, works in National Seating & Mobility’s Houston office. “I run a very large pediatric
clinic in Houston with Texas Children’s Hospital, as well
as their in-patient NICU/TICU departments, so I do use
multiple stroller manufacturers,” he said.

“In my experience clinicians are first and foremost
looking at the positioning needs of the clients. That can
range from maximal to minimal, and we discuss the
stroller options in the appropriate categories. Once we
have decided on the level of positioning required, we
then address what medical devices the stroller must
be able to accommodate. Do they have a vent (which
type)? Do they require an IV pole, oxygen tank, a place
to carry the suction machine, pulse oximeter, diaper
bag, or medical necessity bag?”

Next, Butcher said, the team typically addresses “how
easy it will be for the family to transport, fold, maneuver,
etc. This doesn’t mean that folding and transportation
isn’t important, because it is. To the family, this is probably
the most important factor. However, if the stroller
doesn’t provide the support or the ability to transport
the life-supporting devices they need to take, then the
weight and foldability won’t matter.”

The Negotiation Process

But identifying goals, product choices, and transportability
is just the first step.

“There is a lot of give and take between Mom/Dad
and the therapist,” Tucker said. “We know positioning is
paramount — so in my eyes, that needs to come first.
That has been our way of doing business since day one.
If we can offer all the functions of a wheelchair — tilt,
recline, laterals, thigh guides, medial blocks, etc. — on a
stroller-type frame, everyone is happy.”

“When I do show families equipment,” Sabet said, “I
might say, ‘This fits one goal you told me: This umbrella
stroller makes it easy for you to go as a family. But this
stroller over here is something your child is more likely
to be comfortable in if you’re out all day because it
provides this type of support.’ So it’s letting them see the
difference and really giving them the power to be a big
part of that decision. Then it’s not necessarily my recommendation.
It’s ‘Here are these considerations: This is
really awesome for your family because you’re on the go.
This is really more comfortable for your child and maybe
is more beneficial long term because it provides more
positioning.’ And then you can have a conversation
about that, and it’s very different from coming at it from
a standpoint of ‘This is my recommendation; you can
accept that or go a different road.’”

“Most — not all, but most — parents are very focused
on weight and the ability to transport the stroller,”
Butcher said. “This seems to be the biggest concern for
them, and we try to dig down into exactly how they are
planning on using the device, and what vehicle it will
be going in. Sometimes this will push us one direction
because of the constraints of the vehicle it must go in. If
the ideal stroller won’t fit in the vehicle it must go in, then
it really isn’t an option, and we need to find something
that will fit and provides the positioning and medical
needs required.”

Butcher said appearance is enormously important to
parents: “If this is a first-time device, almost 100 percent
are concerned with how it looks. They do not want an
institutional-looking device that makes their child look
‘handicapped.’ The parents are dealing with a lot of
emotions or denial, and how their child appears to
others is important.”

On a practical level, Butcher added, “What the device
can carry is important to them as well, as they usually are
coming into clinic in a baby stroller with a very large boot
(basket) underneath that is filled with items. The stroller
has become a pack horse that needs to carry a lot of
extras. We have had this be the deciding factor between
two equal strollers.”

So what is most important to the clinician, supplier and
manufacturer isn’t necessarily what’s most important
to the family. “Most of the time, the positioning aspects
seem to be least important to the parents,” Butcher said.
“This is not to say that the parents do not care about how
their child is positioned, but it certainly isn’t what they
want to address first.”

Reaching a Consensus

Sabet said trying strollers in real-world settings can be
helpful in reaching a final decision. “A lot of times, we
come into a clinic with a lot of preconceived ideas,” she
said. “The way I like to get around that is we do a lot of
equipment trials. So if a family is very interested in a standard
basic stroller, we often can create an opportunity
where they can try that over a weekend, and we will give
them a form to fill out: Rate how easy it is to get in and
out of your car, how you felt your child was positioned
throughout the day. Were they able to function, were
they able to participate? Sometimes that trial really is an
eye-opener for families.”

“When there is a difference of opinion on what the
family wants and what the team is prescribing, we will
usually go through the medical requirements again,”
Butcher said. “If the family still wants a device that is not
going to be safe/appropriate, we will do several things.”

That includes telling the family the physician won’t
approve a medically inappropriate device; offering
to provide an appropriate device via the payor, but
helping the family find a more basic device via another
funding source, such as a charity, if doing so won’t
endanger the child; giving the family time to do their
own research; and suggesting the family self-purchase
a simpler device and return to clinic if they later want a
positioning stroller.

“We try to be resources for them, and we never force
them into getting a device when they are not sure,”
Butcher said. “We have some families who leave without
making a decision, then return once they have had a
chance to research on their own or speak with other
families.”