Searching for Meaning in Their Faces: More Interviews, the Inpatient Unit, and a Little Green Notebook | Yuko Okabe, BFA Illustration 2017

Meeting New People and Interviewing Like a RISD Student

“It’s very important to get down to their level, and ask them if they know about the center and what it’s about.  Sometimes, parents don’t fully explain why kids are brought to places like ours.” -Dan Cheron, Ph.D, Judge Bakers Children’s Center

Since my last post, I was able to interview many more patients and clinicians. I have contacted 9 therapists and prescribers (clinician who assigns medication) on the outpatient floor so when and if appropriate I can interview any of their patients for a few minutes.  So far, I have interviewed 28 patients and with more to come with ages ranging from 6-20. Jason and I spoke how though the game would be primarily directed towards 6-12 year olds, getting insight from older teen patients would be vital. In a way, I think that teenagers would have a better understanding of what they need over what they want out of therapy, particularly if they have been going through it since childhood.  Having spoken with a few, they talk very much like veterans and they have so much dignity and awareness of their situations.  They’re honesty and sincerity has been great to see and the energy and curiosity of the younger children has been amazing to experience.

For a little bit, I would use a notebook and pen to write notes.  But then I realized, “Hey,  I’m not a therapist and I’m from RISD so what am I doing?”  It didn’t feel natural.  So instead I started using drawing/note taking on a large sheet of paper so that kids can see what I’m writing.  This proved to be so much more effective, especially kids with low focus or low verbal skills, this stimulated our conversations to a great level each time.  They sometimes draw with me, too!

Just to share some clinical insight form these past couple of weeks, I spoke with the Assistant Director of the Center for Effective Child Therapy from the Judge Baker’s Children’s Center, a center dedicated to improving children’s lives by empowering their emotional, intellectual, and developmental well-being. The Assistant Director, Dan Cheron, Ph.D and I had a conversation about his methods and practices as well as his thoughts about our biofeedback game.  He related how he always introduces himself to a new child first before the parent.  “It’s very important to get down to their level, and ask them if they know about the center and what it’s about.  Sometimes, parents don’t fully explain why kids are brought to places like ours.”  I appreciated the thoughtful considerations he has towards communicating with children, especially what he said about keeping conversations on a first name basis, so kids can call him “Dan” instead of Dr. Cheron.

“It keeps our conversations more casual,” he explained.

He also shared how he would keep language developmentally appropriate, a method which ended up coming in handy during my patient interviews, particularly if someone is very young or has certain cognitive disabilities.

We treat kids like human beings, not their diagnostic. -Miranda Day, Creative Arts Program, Boston Children’s Hospital

“Younger children understand emotions better than terms.” he said.  “So instead of saying, ‘oh, so your parents brought you here because your anxiety got worse,’ you would say ‘what makes you feel sad?’ or ‘do you feel scared and mad sometimes?'”

But on that note, the older kids seem to appreciate my interviews more when I don’t beat around the bush and I flat out say that this is a “therapy” game we’re making, particularly for kids who need to learn how to stay calm and focused.  I have to asses each situation separately and be careful about language and wording each time.

Going back to Dr. Cheron, for the encouraged that we should include a tool box of skills that a child can refer at crucial times.  He also said that, as much as possible, we should make opportunities for children to feel like an expert.  He said this would increase parent/guardian/caregiver engagement and the experience would become more collaborative.  To an extent, this gives children a sense of control and agency of their experience.

On that note, I also spoke with the Director of the Children’s Hospital’s Creative Arts Program, Miranda Day who also believed that children should be given as much control and customization in the game as possible.  A quote that stuck out to me during our interview was, “We treat kids like human beings, not their diagnostic.”

Miranda’s job is essentially to lead and organize music therapists, artists in residence, and a multi-media studio in the hospital called Seacrest Studios (created in partnership with the Ryan Seacrest Foundation).  Music therapists are fully trained staff in a clinical setting who use either singing and/or instrumentation to help children heal.  Artists in Restidence are not fully trained in therapy but instead come from either educational and/or professional backgrounds in fine arts or design practices.  They share their creative skill-set to children through writing, illustration, printmaking, digital media, etc. and in turn, patients can experience these creative projects and even continue to apply them when they leave the hospital.

Visiting the Inpatient Unit

Before our conversation ended, Miranda said that she could connect me to the Inpatient Psychiatry Unit in the Hospital since Jason and I only had luck interviewing from the Outpatient Clinic.  To expand our audience, Miranda said that reaching out to her or her other colleagues about the inpatient unit would be a great asset to our research.

“They’re a very creative bunch over there.”  She related how much the patients valued having the arts program visit them since it keeps them stimulated and excited about their projects.

This past week, I went to inpatient twice with the expressive arts therapist group.  I have to say the reason this experience was very meaningful but moreso relieving, and it may have been relieving for reasons different from what other people would feel.  For personal reasons, I’d like to save some exposition until after the internship ends because I can better collect my thoughts and I’d like to reflect on the experience as a whole in that way.  But what I can share right now is that having the opportunity to visit the inpatient unit was initially both very exciting (because seeing new patients is always exciting) but also very worrisome.  In  a way, I knew what I was going to see but I also had no clue what I would actually experience, especially emotionally.

If you can ignore the ambiguity of that description for now, I’ll sum up my experience at the present as, yes, “relieving.”  And I say this because a lot of my preconceptions were wonderfully proven false.  I expected to see lifeless, bare walls and ceilings but I saw colorful paintings and carpeted floors.  I expected to see barred windows but they were large and hopeful with sunlight streaming through.  I expected the space to feel like a cold tight space, like a prison, but there was a communal kitchen, a beautiful art room with a stereo and a Shrinky Dink, handwritten nameplates for patients’ rooms, and a decent amount of space to walk around.  And the best part of all was seeing the patients.

I wouldn’t generalize anything, especially with gender.  It’s easy to put a strong male character, but we should show that anyone can be strong.  Also show real-life problems.  -Girl from Inpatient

Of course, not all the patients wanted to speak with me, but the ones I got to speak with were really great. Some were reluctant at first, like this one 11 year old boy, but the open-note taking/doodling method had them open up to me a lot more.  I wasn’t trying to jip them of anything:  I really wanted to hear their thoughts and really find meaning in their words and faces.

The patients there, as well as the patients in the outpatient clinic, highly believed that customization, having multiple characters are vital components to engage children. For the friend/coach character, they should be somewhat androgynous, if not explicitly, as well as be expressive and fun while also calm and “coach-like” when timely.  When I asked one teenage girl in inpatient, What is something that this quote-unquote therapy game should definitely do or definitely not do, she said, “I would not generalize anything, especially with gender.  It’s easy to put a strong male character, but we should show that anyone can be strong.  Also show real-life problems.”

With just a few weeks left (ack!) to interview patients and create design/illustrations based off this research, I’m in early stages to develop a character.  I’m seeing the current iterations as plans rather than drawings, thinking through what elements of each kids respond to the most and then continuing to reiterate as frequently as possible.  I’m thinking through the subtleties, such as body language and how the character introduces themselves.

 

 

 

Thinking about the Audience:  The Little Green Notebook

What is it?  Is it going to taste bad?  -“Mikey” reacting to new medication

Before signing off on this post, I wanted to reflect on this project on the perspective of the audience that Neuromotion is addressing.  Of course, this game will initially target younger kids, particularly ones with emotional regulation issues often associated with anxiety and ADHD, but the audience we need to also reach are the parents of these struggling children.

I’ve been making my own sort of assumptions about how these parents must feel having gone through so many therapeutic and medication options to help their child, and I could only imagine how tired these people must be.  But one of the clinicians who I approached about interviewing their patients thought that before I interviewed someone, I should sit-in on their prescriber meeting.  I mentioned this aside in the beginning of this long post, but basically unlike therapists, prescribers help decide what medication would suit a client, in this case, a little boy.

We were all in one office:  the prescriber, the two parents, the child, me, and I think another clinician or intern who sat in the corner.  I first met the parents and their child (let’s call him Mikey) in the hallway with the prescriber, and we both explained what my project was about and how I’d really like to interview their son. They were a really nice couple and Mikey was a little shy, but I liked them a lot.  There were just a normal family.  But then when we were all in the office, the prescriber began to discuss more official business about the son’s prescription amount, how many milligrams they increased and if they need to add more milligrams or try out a new medication.  The Zoloft wasn’t working, the mother shared with a deep sigh, saying that his son had repeated outbursts and was taken out of school twice.  The prescriber then proceeded to make other suggestions and look back at Mikey’s medication history on his computer.  All the while, Mikey was sitting in between his parents, fidgety and anxious.  He only focused when he pulled out his 3DS and played, seemingly blocking out what his parents and the prescriber were discussing over his baseball-capped head.

At one point though, when the prescriber suggested  a new medication to the mother, Mikey, without looking up from his game, demanded, “What’s that? What’s that?”  He repeated it over and over.  After a little bit, he looked up to his father and asked, “What’s that?  Is it going to taste bad?”  His father shook his head and tried to calm him down, but Mikey then turned to his mother:  “Is it going to taste bad? Is is going to taste bad, mom?”  Intently listening to the prescriber, the mother didn’t respond so Mikey dropped his face to his game, defeated.

I was overwhelmed, but I did my best to sit there and contemplate whether I should nod  sometimes or just mostly look at the prescriber.  A few times, I’d make eye contact with the mother, seeing her worried even desperate exhaustion.  I found myself nodding reassuringly, but I have no idea why.  I wasn’t qualified to reassure anything, but I didn’t know what to do.

I’ve never heard so many medication names within a span of 15 minutes. Aside from Mikey questioning the new medication, what affected me the most was a little green notebook that the mother wrote in during the meeting.  As the prescriber listed different medications and their milligrams, she wrote down all his words.

I kept looking at that notebook, and I had several thoughts then and after.  I wonder if she bought that notebook specifically to write down Mikey’s medications.  I wonder how she feels pulling the notebook out of her purse each time at these meetings or when she’s picking up medication at a local CVS.  I wonder if she hates that notebook, that she’s imaging the day that she doesn’t have to take it out of her purse anymore.

Afterwards, Mikey and I were able to go to the waiting area and I think it was a relief to both of us that we could just talk about games and characters.

“He [character] should be a hero!” Mikey flashed a large grin and he drew a Luke Skywalker outfit on one of my doodles. “Can he have powers?  He should defeat a bad guy, like how Luke defeats Darth Vader.”

What I gleamed from Mikey’s interview as well as from all the other interviews so far is that these children, these teens, these people want to have a sense of choice and strength.  This want freedom to explore, to discover, to have fun especially considering their situations where they very little choice in deciding their therapist, their prescriber, their medication.  They want to see themselves in the game, they want to be Luke Skywalker or Batman or Superman or a fairy or a princess in a pink dress…and they want to defeat the forces that scare them the most.

There’s a lot of promises I feel like I’m making with this game.  Some higher forces might come into play unfortunately, like budget, time, budget, staffing, budget… a start-up can only accomplish so much. But at least for now, I’d like to put that away from me.  I’m not about thinking about financial practicalities because that’s only going to hinder any progress.  And it’s not fair to the kids if I just write off everything they shared with me so far.  So my goal is to get as much done as possible and to record everything I find.  The ultimate goal is to increase patient motivation and see what these kids want as well as what they need from this game, and I have to say I think I have a very strong idea of what that should be.

Until next time~

 

Cheers,

Yuko