Pain Management

Hospitals.  Pain.  Needles.  Surgery.  Procedures.  

All words and things that scare children, especially for those who are ill.

It is the roll of Child Life Specialists to help those words be not so scary to children and families.  

All of the Child Life Specialist interviews that I spoke to talked about working with children in pain.  Not only is the hospital a scary place for children but most of the time when a child is in the hospital they are faced with some amount of pain.  Whether it be putting in an IV, getting a shot, to some more extreme pain like that of surgery, or the pain suffered from an illness.  What children as well as adults have a hard time doing, is using words to express their pain.  Thats when in a hospital, a Child Life Specialist can come into play.  While talking to Meghan, she talked about the ability to use distractions with the patients that she works with.  On the cardiology floor of a children's hospital she is able to use things like light spinners, Ipads, and even guided meditation and guided imagery to help alleviate fears and distract from pain.  June, who works in the same hospital but in the ED talked about some of the same distractions for pain like using an Ipad for distraction while a child is receiving an IV.  Both Meghan and June talked about using play as distractions from pain as well.  In particular both women referenced using bubbles and pinwheels to help control a child's breathing during an episode of pain or when they need to relax.  However, because of COVID-19, these little exercises can't be preformed.  I know when I interned in the Alternative Learning Program that deep breathing techniques can also be done by having the child lay flat and placing a hand on their stomach and watching it move up and down.  Unfortunately for a child, that is no where near as much fun or distracting as bubbles. 

However, Shayla coming from a urban and underfunded hospital wasn't able to talk to me about using expensive Ipads and Light Spinners for a way to distract children from pain.  However she was able to bring me back to my readings on play therapy.  Shayla talked about in an ideal world using traditional medical play therapy with her patients involving child life prep with dolls and medical supplies.  It is interesting that from my readings dolls are one of the biggest forms of play within the hospital.  Child Life Specialists along with nurses and doctors can use a doll to represent the child.  By the child showing them on the doll where the pain is located they can better understand how to treat the child.  In addition a child can learn and better understand any medical equipment or procedures that are going to happen by representing it on a doll.  As Shayla puts it, the child is being introduced to the materials in a less threatening way.  

How have things changed for you in your work with children and families during the COVID pandemic of 2020? 👍

 How have things changed for you in your work with children and families during the COVID pandemic of 2020?

June:

A:  Absolutely, yeah, I worked. I actually worked all throughout the pregnancy. I was off for about six weeks, kind of when things started, because they weren't they weren't really sure what to pregnant women. So they're like, yeah, you can stay over for a little bit. But then after they're like, you know, it's time you got to come back. So I worked from out all of April. I went back in May and then I worked all through up until I delivered. I delivered two weeks early, actually.

So I was there. And it definitely everything was harder. It's the biggest thing starting as we all started wearing masks so kids couldn't see our faces, which is awful nervous and absolutely. So it was just so forth, like you can't even it's hard. They couldn't even see us smiling. So it's like someone's coming in. I would always try to do with my eyes like, oh, so they knew. But I mean, it's scary.

Another big thing we blow bubbles a lot in our unit is super distraction tool for toddlers, even like three, four. Even school age kids sometimes love it. We were no longer allowed to use bubbles or pinwheels for helping them through their breathing. Yeah, because we couldn't we couldn't take our masks off and it couldn't be anything that we were blowing.

The kids were encouraged to keep their masks on, which is hard for a lot of kids. And their parents came home and he absolutely so under two they didn't have to but two and over, we had asked that they do. A lot of our kids didn't.

And then the biggest thing was when our kids fall asleep under anesthesia, they go to an induction room and one parent is allowed to go with them. And some of our anesthesiologists decided, well, I think the department decided that parents could no longer go back into that room because it was too many people because of covid, which caused.

A huge I mean, for I think I saw it more than anybody else, but it really it's hard it's hard to tell a kid that they can't have their parent, especially for our kids who had maybe a little bit higher needs coming in. Some anaesthesiologist were very flexible and they would kind of let it happen.

Some of our older kids, they would kind of give up premed in their ivy before they took them so that they didn't really know what was going on. But for our young kids are like toddlers and infants, it was sometimes taking the kids away from their parents screaming. And it's hard to explain to a two year old why we're doing that. So that, I think, was the most difficult thing for me to navigate and for our kids and families, too. I mean, no parent wants to do what they're done, nervous to begin with and then to kind of like watch their kid be ripped away from them as they're screaming down the hall.

That was the biggest thing, social distancing, trying to stay away from people. And a lot of what we do like getting down on kids levels and like kind of getting close to them. And we had to be a little bit more mindful of that. So it was just a little it's harder to connect when you have a mask on and you can't get super close and you can't use the things that kids. You know, that help kids like bubbles or pinwheels.  So it was tough. It was really tough.

Shayla:

A:  I wouldn't say it's changed with covid, I think it's changed a lot as I've grown more. I've been practicing now for a year and a half and I definitely think that it's changed a lot since starting out as a child life specialist.  I've learned to adapt my introduction of services quite a bit, especially in an environment. It's fast paced, there's a lot of moving parts, sometimes I don't introduce services until the entire medical workup is done because I go in, we're replacing a line, we're drawing labs.

We could be straight carrying a baby. We could be doing a lumbar puncture and. I got to go, I got to make stuff to do out what's best. Yeah, and not to say that I'm going into rooms and not saying like, oh, I'm Sarah, but not really going into tons of detail of what I am until afterwards, just because sometimes there's not the time and. That was a weird transition going from an intern, because I did not intern. I didn't do my internship in the IB, so.

Moving into the ED, where the environment is very different than like an inpatient setting and then also learning to adapt. How I interview services based off what that kid's there for, you know, if it's a newly diagnosed diabetic that's going to be admitted, my introduction of services is going to look really different for them than the kid that we're placing a cast on. And they're going home right now. Yeah.

And so just trying to you what is best for myself, like what are my goals?

One of my main key points that I want this family to understand about child life before I go into the room that's going to best serve them on a more long term basis if they need life on a more long term basis. 

I have talked about this before in some of my other posts but out of everything that I learned this questions continues to jump out at me.  It is just fascinating to me how drastically different these two responses are.  My interview with June talks about how her patients are no longer able to blow bubbles and she has to adapt her play to the social distancing guidelines.   Meghan, who works for the same hospital as June, talks about the changes in programs offered to patients and families within the hospital due to COVID-19.  Meghan talks about actors and comedians coming into the hospital to put on shows for the kids as well as workshops set up through the hospital with activities.  Those things have all changed.  On the other hand, Shayla who coming from a lower income hospital does not even talk about how COVID has changed her position as a Child Life Specialist.  Looking back at this interview question, I wonder if Shayla's hospital has any of those activities and programs at all because of their economic standings.  

What made you first interested in becoming a Child Life Specialist? 👍

 This is an interesting question for me.  As I have said, I had no idea what a Child Life Specialist was until my first diagnosis in 2008.  In thinking, without my tumors, I would have had a very different path for my education, which funny enough probably would have been in education.  But I digress, two of my four interviews talked about having a traumatic event in their childhood that lead to their become a Child Life Specialist, whether to themselves or a family member.  

June talked about the hospitalization of her brother:

"My older brother was a cancer patient at Hasbro Children's Hospital in Boston Children's Hospital when I was very young. I was his bone marrow donor twice, two and a half and three and a half. And then he unfortunately passed away when I was five. But I still have memories from our time in the hospital and we have pictures with our child life specialists. So I kind of always had in the back of my mind growing up and, you know, I ended up going down that path and I love it.
So it's really cool. And it's especially cool to be back at I'm at Children's right now, Boston Children's. So it's really interesting to be back at the place that we spent a lot of time at when I was a kid. And now kind of being on the other side is is really cool."

Shayla, herself was a patient in a childrens hospital:

"So when I was about like four four, I had some like bladder and kidney problems and I needed several because I don't know if you're familiar with that procedure. And those are very traumatizing for adults even. Right.  And so I had I was being seen at a community hospital and then my dad works at Johns Hopkins. And so my parents ended up taking me there. And my mom just being kind of the overprotective, wanting to really help her child through. It was like, we need more help. This isn't working.  And Hopkins obviously had child life. And I work with a child life specialist. I ended up needing surgery as well. Nothing nowadays the surgery is very minor, but this is still traumatizing. Twenty years ago, this happened, so. Yeah, I was in the hospital for several days and work with child life, and so that's how I kind of found out about them. But I didn't really want to become a child life specialist until the beginning of college."

With this all being said, why do we have to go through trauma to learn about these positions?  Other trauma related occupations are widely known in society: social workers, counselors, psychologists, therapists, etc.  But Child Life Specialists are very rarely shared to the public.  Why is that?  Are they only idolized when needed? 

Final Thoughts

 You need a conclusion blog answering your initial questions -- how are child life specialists navigating the covid context? What did you learn from this study?  What are you doing next?

How do I wrap up almost five years of study into one concluding blog post?  Well, I can start off by saying that I learn more from this project than I ever thought I would.  Originally when we drew up my plan of study and I was to have an internship at Hasbro with the Child Life Specialists - I thought that would give me everything I needed to know and an overwhelming wealth of knowledge.  But of course, we all know how that turned out - and I figured there was no way I could gain the knowledge elsewhere.  So coming into this capstone project, I was excited but still nervous about not getting all the information I wanted.  Who knew that COVID would be so beneficial to me?  I feel as though because having my interviews during COVID, I gained knowledge that I would have never gotten from an internship.  Once COVID hit, interns were no longer allowed into the hospitals, so again a blessing in disguise.  I feel as though because I got to learn from my interviews about how they are now providing services to their patients and families during the time of COVID, I also learned how to navigate through the uncharted waters that Child Life Specialists are facing.  With no definitive end in sight for COVID I feel as though I can work with children and families in almost any capacity and assist them during these crazy time.  Whether that mean talking to them over a zoom meeting, using unconventional play therapy techniques, or aiding in finding resources that they need.

I have had conversations with the assistant superintendent of Cranston Public Schools to talk about what they can provide for a job there.  And I had an interview at Bradley Children's Hospital last week for a residential care counselor, which I told them I do not want but it got me in the door and talking to the head of HR.  It is a great talking piece to say I graduated from RIC with an individualized masters in Youth Development.  I get to direct the conversation to the courses I picked, why I chose them and what knowledge I gained.  I don't know many people who get that opportunity.  

Risk & Resilience vs. Positive Youth Development

In order to demonstrate how the ideologies of "Risk & Resiliency" and "Positive Youth Development" come into play for Child Life Therapy, I created a chart of different techniques and methods used by a Child Life Specialist and which ideology it fits into.

Technique/method/skills	Ideology?	Why?	Who is the Focus?
Coping with illnesses   - Explaining the illness, procedures, and addressing future concerns for the patient - Using medical play therapy to explain what is happening to patient and the procedures - Use of dolls - Use of medical equipment	Both	From my experience learning to cope with a serious long term illness takes long term methods and therapy.  For the child they may need to just talk about what their illness means and learning about their condition through medical play therapy.  While the parents may need to also talk about the diagnosis, they may also need resources and information from the medical staff at the hospitals.  Thus, like positive youth development, coping with an illness is a creating a positive path for a patient's future.  Positive Youth Development puts the patient first in order to help them and their families cope with the diagnosis. On the other hand, risk and resiliency helps to prevent further anxieties by Child Life Specialists educating patients and families about the illness and providing resources for all aspects of their lives.	Both Child and Illness focused:  They are focused on the illness as they explain and help the child and families understand what is going on.  However they are also child focused as they are explaining the illness in a way that children can understand.
Pain & Anxiety Management   - Drawing how they are feeling - Using picture scales - Using distractions – ipads - Talking to child and families about what is happening to them	Risk & Resiliency	When a patient is in pain or has anxiety about the hospital or a procedure, this need to be dealt with immediately.  What can child life specialists do to aide the situation in the moment - that is the important question.	Illness Focused – The main focus of pain management is for the doctors and nurses to understand how much pain the child is in because of their diagnosis.    However I feel like anxiety management is more child focused because it is working on how the child is feeling mentally and emotionally not just physically.  Anxiety is a long-term management thus each child is different and the implementation is tailored to each child individually.
Identity Development   - Talking to child and families about their future living with the illness or diagnosis - Providing resources - Helping to provide the tools and equipment within the home setting - Helping to educate friends and community on the child’s illness or diagnosis - Providing resources to help aid in child’s identity as they grow up with their diagnosis	Positive Youth Development	Positive Youth Development would state that a patient comes first.  As an example, rather than saying a cancer patient, which focuses on the cancer instead they would say a patient with cancer which now focuses on the patient.  A child life specialist knows, understands, and implements a healthy identity for patients and families as they navigate through an illness and diagnosis.	Child Focused.  Identity Development is completely focused on the child and how they are growing and adjusting in their life with this illness and diagnosis.
Support -	Both	Positive Youth Development fits perfectly with supporting the child and families within the hospital setting.  It is a main job of a child life specialist to be positive and upbeat especially while working in hospitals.  Yes it is difficult for the children and families within the hospital but Positive Youth Development would attempt to make the best of those difficult situations.   The risk and resiliency ideology would talk about how it support the child and family by educating the families on what is happening in the moment and how to best advocate and accommodate the child in the future.	Child & Family Focused.  Support is a huge job for Child Life Specialists.    Sometimes support is what Shayla describes as just being there for the family and silbling – a simple hug during a tough time.  Or support can be talking to the patient and letting them know you are there for them.

 

Curriculum Ideologies

Within the world of education there can be four ideologies categorized.  Schiro (2013) explains the importance of:

1. The Scholar Academic Ideology - this ideology within education is very specific to the world of academia.  Teachers and professors teach the subjects that they know - their specific disciplines.  This can be translated to Child Life Specialists in the way that within a hospital it is the doctors and nurses that are the trained staff that examine the child through the lenses of their specific medical backgrounds.  A brain surgeon would not be able to give input on a child with a heart problem.  Although hospitals have teams that work together, the specialists talk about just that, their areas of expertise.  

 2.  The Social Efficiency Ideology - this ideology talks about how to teach children within schools to be positive members of society.  Within the classroom teachers educate children how to contribute and survive in society; they teach children how to have a productive life.  Unlike the scholar academic ideology which aligns with doctors within the hospitals, this ideology connects with social workers and psychologists.  It is the job of social workers to help prepare a sick child and family for the world outside of a hospital.  

3.  The Learning Centered Ideology - this ideology is the one that aligns with the work of child life specialists the best.  The ideology centers around the needs and concerns of the child mentally rather than within the society.  Within education a teacher works on the growth of a child as individuals, focusing on their own unique attributes.  Child Life Specialists are the ones within the medical world that focus on a youth patient's emotional/mental needs and concerns, while working to help them and the families during their hospitalization.

4.  The Social Reconstruction Ideology - this final ideology that Schiro writes about focuses on social justice within the educational realm.  The purpose of this ideology within education is to help address the injustices and create a more just society for all people.  Within the healthcare world it is a hot topic right now that health care and health insurance is not equal for everyone.  Some children and families just do not have the same support because of a lack of health insurance, thus people are trying to bring universal healthcare into fruition.  

Why is this important?

So what?  Who cares?  Well, Schiro's article is mainly focused on the world of education.  However, as stated above, it can be applied to a multitude of different occupations.  The problem with these ideologies is that they are more or less competing in their views of education.  Overtime it is apparent that within education a teacher usually only fits into one of these ideologies.  Usually it is how they themselves are taught.  This is one reason why there has been little to no improvement within education, because we cannot find a compromise between the four ideologies.  There are too many competing beliefs to properly educate all children within a school.  Children's hospitals have the same problem in the fact that there are too many competing aspects to help treat sick children.  Within a hospital team that meet to discuss the ill child, the staff need to support each other rather than individually talking about their specific expertise.  

References:

Schiro, M. (2013). Introduction to the curriculum ideologies. M. Schiro Curriculum Theory: Conflicting Visions and Enduring Concerns, 1-13.

What is an ideology?

This is a very good question!  What the heck is an ideology and why is it so important?

According to the chapter Introduction to the Curriculum Ideologies, "an ideology is a collection of ideas, a comprehensive vision, a way of looking at things, or a worldview that embodies the way a person or a group of people believe the world should organized and function.  It is a certain ethical set of ideals, principals, doctorines, myths or symbols of a social movement, institution, class or large group that explains how society should work, and offer some political and cultural blueprint for a certain social order." (Schiro, M. 2013)

We all have ideologies within our lives, whether we recognize it or not.  It is how we apply these ideologies to our everyday life that makes us all different.  The following video not only defines ideologies but also gives examples of their applications.

So why are ideologies so important to youth development and child life?  A ideology is what people believe and impacts their way of life and way of thinking for years to come.  If a child is taught to have negative ideologies about their experiences, we can only assume their they will have negative thoughts about their world and the world around them.  Thus it is the role of youth workers and child life specialists that we fill children and families with positive thinking and a constructive way to let out their emotions.  

References:

Schiro, M. (2013). Introduction to the curriculum ideologies. M. Schiro Curriculum Theory: Conflicting Visions and Enduring Concerns, 1-13.

https://www.youtube.com/watch?v=E7yG-Onxqto