Interactions - November/December 2017

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.