INTERACTIONS.ACM.ORG 76 INTERACTIONS NOVEMBER–DECEMBER2017
FORUM UNIVERSAL INTERACTIONS
harm the children we work with? The
challenge is understanding the trade-off between rigor in research design
and causing harm to the children. The
gold standard for effectiveness of an
intervention is a double-blind, random,
controlled experiment. This design
requires an active control group with
a placebo (e.g., sham neurofeedback)
that creates the same expectations of
benefits as the real intervention. That’s
the right design for rigor. But is this
ethical? Putting the children through
an intervention that I was almost
certain wouldn’t help them seemed
unethical. It also seemed unacceptable
to me to use valuable resources and
time to run sessions with the children
using a placebo intervention instead
of using those resources to help the
children in other ways. I was also
concerned that a placebo intervention
might directly harm the children.
For example, it might have negatively
impacted their self-esteem if they
failed to progress. And yet if we do not
use a control group and resort to a case
study, then it is difficult to be sure that
the intervention is effective. Again,
here were may have used valuable
resources but may not be clear about
the benefits.
In Nepal we decided to use a waitlist
control-group design, so that all the
children had the opportunity to use the
intervention. We ran the first group
of children through the intervention
and used a pre-post assessment design
to decide if we thought there was
benefit [ 2]. We saw large within-group
improvements on survey measures
of “calm” and “attention” and saw
little change in the control group, thus
reducing the likelihood that the cause
of the improvement was maturation
or learning. Since it seemed likely
that there was benefit, we then ran
the waitlist children through the
intervention [ 4]. This study design felt
like a balance between being rigorous
and being ethically sound.
Fourth, how do we manage children’s
expectations and attachment with the
research team in ways that will minimize
any emotional damage to the children?
The challenge is determining how
to manage children’s expectations
and attachments to us as researchers.
When I was speaking with the head
of a Nepali orphanage, I learned that
study, our starting point was the
report cards that the school used to
assess the children. These gave us a
further window into the school’s goals
for the children. Fully understanding
the goals required us to ask questions
about their notions of well-being and
developmental milestones. We had to
be willing to listen to the answers, even
when it meant revising our research
designs and protocols. We spent almost
a week at the school before starting the
study, redeveloping our survey-based
assessment instruments and tuning the
Mind-Full system and session protocol,
which dictated how the counselors
would work with the children. Many
elements of the study design changed
as we adapted it to a culture and
environment that were very different
from any in which we had ever worked.
Our study results indicated that all
of the children were able to learn to use
Mind-Full within a few minutes. Over
time, through their sessions with their
Nepali counselors, the children also
improved their ability to self-regulate.
They were able to calm down and
focus, not just on playing the Mind-Full
games but also on the playground and
in the classroom [ 4]. From a research
point of view, the project was a success.
But at the end of the day I had to ask
myself if the children really benefited.
For the answer, I turned away from
scientific evidence and looked to the
responses of the people who gave their
time and energy to do the study with
me. When the head counselor at the
school asked us to continue working
with them, I had some assurance that
I had helped them provide benefits to
their children.
Second, given the requirements of
many university ethics boards, how can
we work with children who may most
need help but are least able to give assent?
The challenge is how to work out
ways of presenting research that are
comprehensible to children. Otherwise
we exclude the children who could
benefit the most from the work we do,
because they cannot easily give assent
or because they may be difficult to
access or work with.
In Nepal I faced the challenge of
how to get assent from children who
did not speak English, had not yet
learned to read and write, had never
used computers, had never seen an
EEG headset, and, of course, had no
idea what research was. Yet somehow
I had to explain these things and ask
them if they wanted to participate in a
research study with neurofeedback to
improve their ability to self-regulate!
Instead of telling the children
what the study was about, we decided
to show them. For instance, we
demonstrated how to take pictures
with a tablet, which some had seen
tourists do. We showed them that
they could tap on their photo, which
served as their ID, to start the Mind-Full app. The first game began with
an illustration of a young Nepali
girl holding a pinwheel, which was
something they could understand and
mimic. My son, who was 12 years old
at the time, demonstrated how to play
the Mind-Full games. The children
watched him take deep breaths to
calm his mind and saw that this caused
the pinwheel on the tablet to spin. All
the games were based on activities
that were familiar to the children.
My son showed them how he used his
body to cause digital effects that were
represented in ways that made sense
to them (e.g., sustain calmness to land
a paraglider, focus visual attention to
build a rock cairn). Although my son
was foreign, male, and older than these
children, he was not yet an adult and
he had no existing power relationship
with them. The entire assent process
took place between the children, my
son, and their counselor. I think this
may have avoided the power imbalance
that would have existed between me
and them if I had been involved. I’m
still not clear if the children really
understood what it was they would
do in the study, but I think they did
understand that it would not harm
them and that it would be different
from anything they had ever tried.
They were curious to give it a go.
Third, how do we find a balance
between conducting rigorous research
and ensuring that our research does not
The entire assent
process took place
between the children,
my son, and their
counselor.