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

Ideologies - Positive Youth Development

It has been proven that Positive Youth Development is a main ideology for Youth Development (Cite), but can we say the same for Child Life Therapy?  The orientation of positive youth development states, "a focus on fostering strengths and positive growth (also helps prevent negative outcomes)."  A Positive Youth Development approach focuses on the youth's positive traits and builds upon them to help the lives of both of the youth and their families.  

Although this video is centered towards Big Brothers, Big Sisters - it is a great resource for any youth workers learning about Positive Youth Development.  The speaker states that "positive youth development is saying we need to be sure that we build positive influences, positive assets, and a really strong foundational structure for our youth and their life."

Why is it important?

It was once said to me that you need to put the child and/or patient first.  Instead of saying they are a cancer patient, which puts the focus and emphasis on the cancer, a more positive way would be saying, the patient with cancer.  This simple flip within the sentence gives a positive statement that focuses on the child or patient whom is receiving care.  This example can be applied to many different scenarios within youth work.  Drug dependency, alcohol abuse, learning disabilities, sexual orientation, the possibilities for positivity are endless.

Nevertheless, this ideology doesn't stop with just reframing how people talk about their situation, but it also helps them reframe how they think about it as well.  The key to positive youth development is to reframe their situation into something positive!  It takes a special kind of person to give troubled youth a clear path through their struggles and even more amazing, a positive path for their future.

How does this relate to Child Life?

To reiterate what has been said above, Positive Youth Development insures the well-being and future of the child is the focus of the conversation rather than their illness.  Instead of a troubled youth, it is a youth that is ill or hospitalized with something outside of their control.  And yet, it is the job of child life specialist to work with children and families within the hospital to help them not only stay positive now, but create a positive plan for when they are exited from the hospital.  This can be as simple of distracting them from the pain with a positive activity to using play to help the child explain what they are feeling.  

Ideologies - Risk & Resiliency

An important ideology with the realm of Youth Development is Risk, Resiliency, and Prevention.  As explained to me the belief behind the ideology is "Teens' brains are not fully developed, and so teens do not always make the 'best' decisions.  Children and teens need specific coaching in how to make good choices for themselves.  Urban youth lack 'cultural capital'". (Citation) 

What does this all mean?

This video gives a very in depth view of Risk, Resiliency, and Prevention for Children for many different factors. These include COVID, substance abuse, and suicide.  

Why is this important?  

Dr. Dawn Elise Snipes explains that people "need to remember the impact we have on our family and the impact they have on us.  So when our children are sick for example, you know that is really stressful and effects us as well". (Citation) We have heard this in the literature and from Dr. Bowen - when one member of the family is sick, the entire family is ill - a child's illness affects everyone.  (Citation)

So what does this have to do with Child Life?

For child life specialists, it may not affect them at all.  Families may have the means to take on a family illness without it affecting siblings or other members of the family.  Wealthy families are able to have a babysitter at home taking care of other children while the parents are at a hospital with a sick child, they may be able to get time out of work, and have the resources available to help the child with any learning of physical difficulties they may have after a diagnosis.  However, this is not the case for all families with children in the hospital.  Shayla gave a very different view on Child Life during her interview.  Sometimes a child life specialist has the "simple" job of making sure the families of patients have what they need in the moment.  Whether it is a mom who needs a warm blanket or a sibling who needs something to eat while waiting in the emergency room with their families because they had no one else to watch them.  Shayla's work in an urban part of the country gives a very true to life, and unexpectedly opposing, view than what I had always associated with Child Life.  

Sometimes while working with youth and families as a child life specialists it is also about helping to prevent depression and anxieties in the hospital by working with the families to educate, understand, and by providing resources.  

Mary - 10/26/2020 👍

Through June I was able to meet one of her colleagues from Boston's Children's Hospital.  Mary works in the inpatient cardiology unit and interestingly, enough gave me yet another perspective on Child Life.  It was obvious from the start of the interview that Mary really knew her craft!  When asked the very first question about her definition of Child Life, she was able to provide a whole range of information about Child Life in her answer, she was a wealth of information and knowledge.  Talking to her was very interesting as I got to learn some more of the ins and outs of child life specialists and their work.

After going back and watching the four interviews I can honestly say that my interview with Mary made me very uncomfortable.  When I interviewed Rachel, June, and Shayla, I had a very strong connection with them - a connection that made it very easy to share information and stories about the field of child life.  However I felt as though Mary was more about the information and facts rather than telling me stories and the personal emotions felt by a child life worker.  

I am married to a math man - a guy who can spit out facts, numbers, and information at the drop of a hat.  However I am the complete opposite - I prefer listening, talking, and connecting with people.  It was another preconceived notion of mine that child life specialists would easily connect to just about anyone and use words and stories to make children and families feel more at ease.  It was very interesting that she did not provide the stories that my other interviews did, she, like my husband kept to just the facts.

After looking over my notes and listening to the interview one more time I realized that although I felt very uncomfortable in my interview with Mary, I got a lot of information for her.  However, while relistening to our conversation I kept thinking how different my own hospital stay was to the work that she does with her patients.  I wonder if that is a part of why I was so uncomfortable, maybe I was not able to connect because that is not how it was for me.  

Mary talks about "Preparing the patient before the procedure, letting them know what to expect, what the procedure it going to feel like, what they are going to see, what its going to smell like even." And I cannot remember this ever happening for me, I don't remember a whole heck of a lot of my hospital stay besides what has been told to me, so maybe it did happen but I do not remember it.

I would have enjoyed this interview more if Mary had given me some examples of how she and her team prepare the patients for procedures.  Do they just talk to the patient and families or do they bring them into the operating rooms before hand and show them the medical equipment they are going to have around them?  Do they work with the doctors and nurses to introduce them to the children ahead of the procedure so they become familiar?  What tools or techniques does she like to use most when preparing the patients?  In reality as I look back I wish I had asked more clarifying questions during the interview to get some of those questions answered.   Personally, I am a talker and when asked about something I am passional about I tend to just talk and talk, even in circles - so it may be my bias but I assume most people are the same way.  So if I have to pull information out of someone on a subject I assume they are passionate about, I tend to back off thinking they might not be enjoying it.  Maybe in retrospect this is why I found my interview with Mary so disheartening because I wasn't able to get them same personal information and insight as I did my other interviews.  

Death Doulas 👍

 Death Doulas:

What are death doulas?  To answer that question we must first ask, what is a doula?  A doula is typically connected with births... they assist mothers on the journey of bringing a baby into the world.  Why is there no one to assist those leaving the world?  Thus the idea of the death doulas was created.  For years and across cultures, death and dying is often a very taboo topic for people to talk about.  However, many people in hospice or in the terrible situation of having a terminal illness have to face their own mortality.  Death Doulas help with this process.  They are not only working to normalize the death and grieving process but at the same time working to create lasting connections during a patients final days.  

Unfortunately, I haven't been able to find many numbers for Doulas and Death Doulas within the United States but in terms of Child Life Specialists, there are 53,500 within the United States as of 2016.  According to the Bureau of Labor Statistics, their annual salaries has a median of $60,000 - but is dependent on the demographics and hospital.  

For me personally, I am both intrigued and concerned when I see only 53,500 Child Life Specialists in the United States.  There are 250 dedicated Children's Hospitals in the United States - if Child Life Specialists were only in the hospital this would mean that there were 214 Specialists per hospital.  However, because they can also be found in private practices, out-patient clinics, and other locations this is not the case.  According to Jane, she has 70 Child Life Specialists at Boston Children's Hospital, including music and pet therapy - no where near the 214 that I calculated.  There is no data to find where these other Child Life Specialists can be located.  Does this mean that we as a society do not value the work of Child Life Specialists?  I would agree and disagree with that statement - I would say that we do value it with the justification that every Child Life Specialist that I have spoken to had interactions and experience with them in some capacity in their youth.  In my thinking - those interactions must have been extremely valuable and memorable for them to grow up to chase that dream job.  But does that mean Child Life Specialists are only valuable to those who have been affected?  I would say yes that they are not valued outside of the walls of a Children's Hospital because they are not "advertised".  

References:

https://college.mayo.edu/academics/explore-health-care-careers/careers-a-z/child-life-specialist/#:~:text=Today%2C%20the%20special%20emotional%20and,specialists%20in%20the%20United%20States.

Missing in the Literature 👍

After my interview with Shayla on Tuesday October 20th, I started thinking about what she had said and what is missing in the Child Life Therapy literature.  Shayla talked the concept that often when people think about Child Life it is all "sunshine and rainbows" and helping children in the perfect way, but it is not always that simple.  She told me a story about the night before our meeting that she was called onto a regular floor to meet with a family who's daughter was dying and they wanted an end of life conversation with the family and her two brothers.  This type of interaction with child life is not talked about in the literature as much, or as Shayla explained in any of her courses.  Not only was she there to comfort the patient in her final hour but she also had to comfort the family in the best way possible.  As mom held onto one brother on one side of the hospital bed, the best intervention that Shayla could come up with was to kneel down and hug the second brother.  She explained that it probably wasn't the protocol or best practice but it was what the family needed at that time.  The reality is not everything can be "taught" in the classroom or found in the readings - it just comes in the moment while you are working to best support the families.  

Why is this not talked about?  It is obvious that there are going to be children in the hospital are are going to die.  So shouldn't it be a more prominent discussion?  Especially when they are terminally ill?!?  What is holding us back?  Do we not want to scare them?  Are we afraid that families will not able to comprehend the reality of death?  Maybe, it is just that we don't know exactly how to talk about death.

One of my favorite courses that I took at Rhode Island College was a nursing course with the focus on Death and Dying.  It was early on in my education at RIC but rereading some of my essays, I still have the same opinion on death and dying as I do now.  I am not and have not been afraid of dying for as long as I can remember.  I have faced my own morality on numerous occasions and my doctors have repeatedly said that I am a medical miracle.  This course showed me that my thoughts on death are not typical for many people.  Most people my age have not had to face death or think about it at all, and many of the people who have had to face death are apprehensive about it.  I am not.  I wrote in one of my essays for NURS 312:

"It has interesting that the people I have talk to about death who have chronic medical illnesses, are the ones who have accepted their death and are no longer afraid.  It is when people are not confronted with their own mortality throughout their lives that they do not have a chance to understand that death does not have to be as scary as they make it out to be.  I have said my goodbyes and if something were to ever happen, I would be more ready to die than an average person my age.  It is unnerving for me to say that to most people, if they don’t know my history and story but to me it is very normal."  

I read two of my all time favorite books while in that course, Tuesdays with Morrie and The Last Lecture.  Both have the prevailing theme of dying throughout the entire story and yet I still hold them both close to my heart.  When talking about both to almost anyone, they say they have watched Tuesdays with Morrie on film but not read the book and many haven't even heard of The Last Lecture.  As a society are we more ok with watching and hearing about death on the big screen than we are with reading about it or being around it in real life?  Hundreds of people died in the Titanic, and yet it is one of blockbusters biggest hits.  Why?  In talking to Corinne, it made me think that as a society we are filled with death and dying and yet we have become desensitized to it on a global scale but not in an individual and personal way.  There have been more school shootings and mass killings in my life than ever before.  And yet, our society keeps going on each and every day.  Even in this pandemic, thousands are dying but we keep trying to continue our daily routines.  Is that because we don't like to face the idea of death?  We don't like to think about it, it makes us uncomfortable and thus it isn't a big deal?  It won't happen to me so why bother?  

My husband lost his father to a brain tumor when he was only ten and we lost his mother to uterine cancer when he was 24ish.  While his mother Carole was dying, we went to the hospice center on multiple occasions.  However Matt was always very noticeably uncomfortable.  To this day, I remember the day we got the phone call from the doctors saying she probably would not last the night and Matt refused to go up to see her.  I argued with him that it was not about us, the people who were living but about Carole and that she needed someone there but he was adamant about not going.  To him, he did not want to watch another parent die and who was I to push him?  His brother had up and left for another state with everything that he wanted of his moms leaving Matt to deal the house, the finances, the funeral planning, and the inevitable loss of their mother all while finishing his semester at URI.  To this day, Matt does not like to talk about either one of his parents, which to me is very sad because I like to remember them - I have pictures of them all over the dining room and would love to know about them to tell our children one day.  I have had my fair share of loss throughout my years, nothing compared to Matt but I feel as though my thinking on death and dying is so different than most.  I like to remember those who have passed, through pictures, videos, even celebrating their lives, however for Matt he is still very uncomfortable about the whole idea of death.  It in interesting that none of my other interviews talked about death really at all - which is very concerning - do they themselves not like to talk about it or have they not had to deal with it as much in their positions?  Is that because Shayla is in a more urban part of the country where death and dying of children is more of a regular occurrence?  

Shayla - 10/20/2020 👍

When I was looking for people to interview about Child Life Therapy, I put a post on a facebook Child Life group that I am involved with.  Thankfully a woman Shayla reached out to me saying that she would be more than willing to do an interview with me, and was I glad that she did.  Shayla is a Child Life Specialist at University of Maryland Pediatric Hospital in the Emergency Department (ED).  The community that she works most with is low income people of color, so it was very interesting talking to her about Child Life.  Shayla does not have the same resources and funding that my other interviewees have.  In addition, the population that Shayla works with does not have the same conception of understanding about Child Life workers, programs, and important role that my previous interviewees spoke about.  Shayla spoke about some families that are not able to stay with their child through the night because they have to go to work or have other children at home that need to be taken care of.  Because of that and so many other factors, the families that she worked with may need different approaches and interventions.  She explained that sometimes the best way to connect with the family is to get them what they need at that moment and sometimes that is just a glass of water and a blanket.  This interview was very eye opening to me.  Shayla talked about the "dark side" of child life that no one ever talks about.  

https://ri-college.zoom.us/rec/share/ZUABvjVfpzalHHDJgtNBb6j5IjG3TsDJixlUbvG4Zn1sCdCSZKra1DIHOhDzPlIs.3f9c27az3JzA-SjM?startTime=1603226411000

Transcript of Interview:

All right, step in your own words, can you talk to me a little bit how you would define a child life specialist and what they do, what their job is?

 
A:  Yeah, so.  I my personal philosophy on child life is that we meet in families where they're at typically within a health care setting and we address their psychosocial needs in that moment. And by doing that, we assess what is needed and then provide appropriate interventions based off that assessment. And so that can look like a lot of different things for a lot of different families.
But I think one of the key elements of a child life specialist is the ability to assess and then provide whatever intervention is appropriate for that family, because there are so many wonderful child life interventions that you can use in various different practices and in various different environments. But not all families and not all patients and children are going to benefit from every type of child life intervention.

And so it's really about assessing and addressing those psychosocial needs and that moment and then also creating like a long term plan of care and ways to help families and children cope throughout their health care journey.

All right. Can you talk to me a little bit about because like everyone who I've interviewed has used the phrase meet a child where they're at. What does that mean to you? 

A:  I think it's for me it's going in to a room and trying not to have preconceived notions about what I think that child's going to need based off of like what I hear from nursing or what I hear from doctors.

It's and at times. Also kind of not, you know.

Having preconceived notions based on what parents think they're going to need to, because sometimes parents also go into stressful situations and think their kids are going to react certain ways and interpret things in certain ways, but taking that and listening to that, but also really tuning in with the kid and meeting that child where they're at and doing your own assessment in that moment while also taking the input of parents and families and doctors and nurses.

But. You know, addressing what that kid needs in the moment, but also knowing that meeting that child where they're at is going to change throughout your time with them.

And so that could be right within that 15 minute time span here with them, especially for me in an emergency room or like a long term care that can change day to day. Yeah, and so trying to not have a plan of care in mind before you meet the family and it's important to go into a room and have some sense of how you're going to intervene and options of what you're going to offer.

But knowing that that can all go out the window just depending upon what is appropriate for the child.

And thirty two seconds. Yeah. Gotcha. 

The above question with Shayla was a really interesting one for me.  It wasn't part of my original interview questions so it was nice to just have a conversation about what "meeting the child where they are at" meant to her because it was not the first time I had heard that during my interviews.

OK, how did you get involved with child life? 

A:  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.

Like, I didn't anticipate going. Yeah, I didn't anticipate going into child life throughout high school or anything like that. And it wasn't until I started working at a rehab hospital like a pediatric rehabilitation hospital in Baltimore, and they had child life two that I kind of was like, oh, I kind of revisited what child life was and realized from a professional setting.

I really enjoyed it and wanted to pursue it professionally. Why were you in nursing? No, actually, I grew up. Like, I was pretty much like professionally trained in dance, and so I went to college originally for dance, so I went to a very small liberal arts college and ended up transferring to a bigger college for child life.

But yeah, so I kind of changed completely. And it happened. Yeah. So you were originally this kind of leads into my next one. 

I have found that most of the people who are child life specialists only know about them because they have had interactions with them.  It is not a "typical" job that is advertised unlike a social worker, or guidance counselor which makes it a pretty uncommon field consequently a difficult field to get into because there aren't many opportunities for internships and education.

What was the process that you went through either professionally or educationally to get to where you are?

A:  Yeah, so I pretty much knew my friends like my first semester, freshman year was kind of when I was having a lot of doubts. And so thankfully I transferred I don't even last year at this college. So I transferred to Towson University that has a Child Life Master's program, and I met with the program director of the grad program who ended up being my advisor. And she just was like, OK, you really need to start volunteering and just kind of getting a sense of if this is really what you want to do and just kind of get those hours.

And so I started volunteering at Hopkins and then I still continue to work at this pediatric rehab hospital. Right. And then Charleston has an accelerated graduate program. So you can do their undergrad program with a concentration in child life and do their master's program in five years. Wow.

So I applied for that the same time I was applying for a child like practicum. And then I got into the grad program, I got a practicum. And then right when I was finishing my practicum, a child life assistant position opened up at Hopkins where I'd been volunteering. So I applied for that and was fortunate enough to get that. And then I just kind of maintain being an assistant, finishing grad school that applying to internship and then setting for certification and then getting a job.

And here we are seeing. 

What are your strengths as a child life specialist like?

A:  Like for me personally or I think you personally talk to me about you.

One thing I think I've gotten a lot of feedback from various supervisors and colleagues is that I have and something I try to bring to my personal life, too, is that I tend to be like the go to person in a crisis. I can be very calm and levelheaded. And those moments, which has really shown to be helpful in the emergency room, I can imagine. And so I think that's.

Which is really interesting because as a person, I, you know, have lots of anxiety, I have my own mental health issues. And so it's always really funny when people are like, oh, you're so calm and you're so you have such a calming presence. And I like that I'm able to give it off because, you know, sometimes inside I'm like, well, I'm dying inside.

I'm glad I'm glad you think I'm coming back. I just try to be. Relaxing, honestly, I had a student with me a couple of months ago, and she was with me just for probably three days or so, and we were wrapping up kind of the end of her week.

And she was like, just like you kids like really differently than I've seen a lot of people prep kids. She's like, you prep them in a way that's like you don't make things seem like a big deal. And she's like not like you're undermining their feelings, but you're so casual with the way that you talk about it and you're so calm about the way that you talk about it, that it's like she's like it made me feel like, oh, like this is just an I've just got to do it. We got to get it done. But like, here's how to make it better. And that's just kind of the approach I have.

With most things and I think that works for the emergency room environment, who's to say I don't know if my style would change if I did it worked on a different unit, but I tend to take things as they come and address things as they are needed. And I think being able to stay calm and have patience is.

I'd like to think it's one of my strengths. It sounds like it. 

So if I had to ask you for, like, a situation that kind of played off that strength and was in the end a good outcome for a patient, what would that look like?

A:  Well, last night, I. Work until eleven thirty, but I didn't end up leaving work until almost one a.m..

There is a death in the Picayune and after a certain time the specialist covers the whole hospital. And so I got paged just they were withdrawing care from a teenage patient. And it wasn't I had never met this family and. So I got the page and I always I'm very attached to my team and my staff, I work really well with them. It's always very different, like going to another unit. And I go to their unit plenty.

But it's just there's nothing like your own staff. Yeah. Yeah.

And so I always get like, oh, God, I don't feel like dealing with this, but, you know, you've got to do what you got to do and you gotta, you know, be professional and move on. So I went up there and the mom was just at a loss with whether or not to have the three younger brothers come up to visit. And just looking for me to just tell her what was appropriate. And I was just like, you know, I there's no right or wrong answer to this.

And we kind of talked through what she thought, the pros and cons of both. And she ended up deciding to let them come up. And lots of family came up.

And I was just kind of lingering outside of the room because we had made a plan that, like brothers, we're going to come up, we would let them see sister. And then we were going to do like handprints and molds and whatnot. And I was just kind of lingering outside the room waiting for siblings to come. And mom came down the hallway with the two oldest ones who were like school aged kids, older, maybe like older adolescents, and then like a school age kid.

And when they entered the room, they just like completely lost it emotionally, like complete hysterics. And I just go into very much like crisis mode. And so I just like went into the room and like Mom went on one side of the bed with one brother and I while on the other side about the other brother. And I just like crouched down next to him.

And I tend to be and I don't know if this is always the best approach or the most appropriate approach, but I tend to be more hands on with families in this situation. I'm very physically affectionate and with covid I know that's not always great, but in this moment, that's what this kid needed, like my other brother. And so I just wrapped my arms around one of the other brothers and we just kind of talked through what they're feeling in that moment.

And I was able to talk to mom beforehand a little bit about like their perceptions on death and like faith. And I could incorporate their thoughts and feelings on that in our conversation. But when I came out of the room by myself, the nursing staff was like, I don't understand how you're holding it together.

And I'm like, oh, like know. And I was such and just work mode at that moment. And I was like, oh, well, I mean, I have to. And they're like, that was one of the worst reactions we've seen. Like it was horrible. And I don't even really remember it that much because I just went into like I just yeah.

Yeah, you just have to make it not it's not about you and not that it's wrong to shed a tear or to show your own empathy and sympathy, but I just go into. Fight or flight, and my fight is support right now.

I think that's more. Most recently last night, just something that's been on my mind, that's been something that I was able to do. And I feel like I felt honestly a little bit useless up until siblings came. And I was like, OK, this is what I'm here for and this is how I can support. And so who knows what you know, when they look back on this day, what they'll remember, but I hope they at least can know that they did have people there to support them, to support them and are there for them.

So and this is just me listening to what you're saying.

This is a story that really stuck with me, so much so that I shared it in my presentation with YDEV.  It is interesting that she was so honest in saying it probably wasn't best practice but in the moment, it was.  So even with all the training in the world, it is the situation that dictates and drives the techniques that are implemented in the moment.  

Would you say that you were not only there for the patient, but you were there for the family, whereas like the doctors and the nurses were more so there for the family? 

A:  For the patient, I'm sorry. Yeah, I think. Yeah, from like a child like textbook situation, like, of course, we look at doctors and nurses are there to help the medical aspects of this patient, and that is why child life is important, because we're there to support families.

But this patient had been in the picture for not quite a week and. The You staff had formed a really great relationship with mom and dad, siblings had not yet been to visit or anything. It was just mom and dad that had been around. And so I'd be lying if I said I was the only person supporting family because I definitely wasn't.

But I think. What's helpful about child life in those moments is that even though we know that this child is not going to make it, she's neurologically devastated. We're going to have to withdraw care at some point, like there are still changes happening, happening physically. There are still alarms going off. Nurses still have to do different medical aspects of it.

Doctor, still to talk to family about organ donation, I'm just that one person that doesn't have to do any of that. Like I'm not here to be like, oh, just so you know, like we have to remove this or that thing from that medical. Yeah. And they handle the pick your team. They're experts and end of life stuff, unfortunately, but they are and they're great about doing it, but they have to be that person that's like, oh hey mom, I need to talk to you about we talk to you about organ donation.

Can I pull you aside and have those hard conversations where.

They like when mom would and I spent four hours up in the pic, you like helping family back and forth to bedside, but I think for the mom at least, she knew that whenever she saw me and was interacting with me, like I wasn't going to break any more news to her. I wasn't going to have any more additional like, oh, make this decision. Now, we need to talk about this now. Which I think is helpful for families to know that at least like when they're sitting with me and when I'm supporting them, I'm not going to be like, oh yeah, that's what are we going to take out the intubation to or what are we going to remove this stuff?

Yeah, and from a nursing standpoint, you know, that wasn't that nurses only patient that night, and so she has changed a dying patient in one room and then another dying patient in another room. And she still has to continue on with medical care and so with everybody else. Yeah. And so my focus was definitely more on the emotional aspect of family. That. I think it's interesting, the two different worlds coming together.

Yeah, I know that you have talked about interventions when you're having a difficult situation and like the one last night, what are some like what are your I don't want to say favorite interventions, but how do you what do you use? 

A:  I think it depends on the situation again, like last night was very was a very serious, heartbreaking situation.  But my day to day is and death, I do deal death in the setting. But my day to day is IVs and sutures and broken bones. And so. I would say my main intervention is building a relationship with the kid before any other physical thing that I provide.

I'm really fortunate that in the end, I have a really good relationship with all my nursing staff and all my attendings residents obviously come and go, so. I do my best to educate residents and form relationships with them, but ultimately it's my attendings and my nurses that I work with day in and day out.

And we have a big team approach when it comes to creating care plans for kids, when it comes to what type of pain management are we going to do, what type of farm, even pathological pain management. I'm very present for all those conversations. And so I think. At times, it can be easy to say, like, oh, my favorite entrenchments, like I'd be lying if I said my iPad wasn't my go to, you know, it's there.

I have it. It's great for distraction. But I would say, like my biggest and most valuable intervention is being able to collaborate with my team and knowing that we can adjust and reassess the plan at any point that I feel like it's not going well. And in order to have the best outcome, I need a relationship with that kid, so being able to go and make a quick assessment, can this kid tolerate it with minimal medication? Will this kid need distraction? If so, what type of distraction?

And then communicating that with my nursing staff and my doctors of, hey, this is the plan. Which isn't the most like best cookie cutter child by fans are like, oh, my white wand, but I mean, that's the truth, right?

And that's what I'm looking for.

Have you found that your either your interventions or the way that you're connecting with kids or any of that have changed in our covid times? 

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 ED, 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. 

Right. So. Talking about figuring out what services work best, have you have you noticed that your services towards one? I don't want to say minority, but one group is different than another. Do you think?

Or at least in the way that you interact with different groups. 

A:  No, I, I mean, I work.  In Baltimore City, my the majority of my population is children of color, and then with that, Baltimore is one of the poorest cities in our country. So I would say I work with the main population I work with tends to be lower income African-American children.

And so I wouldn't say like my intervention or my interruption of services changes from group to group because I typically don't interact with that many different groups.

All right. So now I would say no. I think, to be honest, I did my internship in Texas and Dallas, which is just so vastly different from Baltimore. Yes. And. I think something I've really learned to think about and reflect on is that.

Two families that I work with, child life services, often look like a luxury to families who don't have their basic needs met. Right. And so I've learned that sometimes the hostility or just the at times me perceiving that like, oh, they don't want to talk to me.

It's not about not wanting child life. It's that this mom has three other kids at home and she's trying to figure out who's going to pick them up. She has to go home and make dinner. She has to get herself to work. But her other kids here, who is going to pick her up from work, the kids getting admitted, who's going to stay with this kid? And she needs water. She just needs water. She just needs something to drink and she just needs food.

So I think that has changed a lot of what I do in terms of sometimes I'm literally just giving that mom water and giving them a blanket before I introduce all of what. Yeah, so I think from that aspect, it hasn't changed. It doesn't like the way I interact with families and patients, doesn't change change day to day today now. But I think it's changed quite a bit, kind of moving from one population to another and just different areas.

And I'm from Baltimore. I was born and raised in Baltimore. So that. You know, I'm familiar with it, but I think learning how to practice child life in Dallas. It was it's different, it's just very different.

I can see that, yeah, my brother lived in Texas, so, um, do you think that. And forgive me. Being a white woman, do you think that identity affects your work, especially in the populations that you work in? 

A:  Yeah, I mean.  Absolutely, I think I think it affects my relationships with family, with parents more than just kids, you know. Kids. Tend to be. More trusting, and they tend to judge you based off your actions in that moment of like, oh, hey, she told me the truth about this needle or she gave me these toys, you know, versus parents who have their own experiences in their world and the world in their own opinions on things. And so at times, I think it definitely does impact.

I work I work quite a bit with our psychiatric population, which tends to be more so like a behavioral health population, which it's a lot of kids that are up.

I don't know if you're familiar with emergency petition to. Police can emersion emergency petition anyone, really, if they feel that they're a threat to themselves or to other people, and typically they emergency petition adolescents for doing dangerous or illegal stuff when they bring them to us versus bringing them to juvie. Not to say that we get emergency protection for kids that are self harming.

And that is tough, too. But we do get a lot of emergency petitions for just a kid acting aggressive toward mom. And I've really had to learn to think about how I'm going into those rooms and what that adolescent is going to think of me right off the bat, because so many of the kids that I work with have experienced so much trauma, the loss that these kids have experienced, the violence that these kids have experienced. You know.

And on the outside, I am a privileged white woman. And so knowing that going into the room, I think.

It requires a lot of self reflection. Yeah, and the ability to not make it about you when a kid doesn't want to talk to you and doesn't have it isn't about having a relationship with you. And I haven't thankfully, I haven't really had experiences where kids weren't open to talking to me, but not to say that that's never going to happen.

But I just really try. To be mindful. Of how kids can perceive me and how families can perceive me, but, yeah, I definitely think I think and nowadays, too, and the culture that we're in and, you know, the social tensions that are happening, you know, I'd be delusional if I thought that the color of my skin didn't impact some of the families that I worked with. Especially parents.

I think there's such a stigma, especially for African-American women, that the health care systems don't take them seriously and they don't address their needs.

And so sometimes. What other people interpret as them being aggressive or loud, it's just them trying to get their voice heard and trying to get the needs of their child heard, and I think reminding myself and helping remind my staff that, you know, that this mom is escalating. This mom is talking loudly because she feels we're not listening to her finger. I think is more helpful just to have us all as a team reflect and better assess and address these families needs.

I like that, I like that you bring in the staff to your answer. Yeah, I really. I love my staff. It shows. 

What advice would you have for a brand new child life specialist just coming in or even an intern? 

A:  I think my advice for an intern and the child life specialists would be very different, I think as an intern, like I would just say, like take absorb everything you can and.  Ask all the questions that you feel are dumb and go through hypotheticals, if you don't get the chance to see certain things, talk through them, and then because if you don't, then you're going to be stuck by yourself one night doing it by yourself and not that. You can do it, you can get it done, but it's helpful to kind of talk through those things when you when things are it's low staff.

Yeah, you have somebody.

But for a new child life specialist, going back to my staff, I think, like when I started in the end, my number one priority was being on my unit 90 percent of my day because out of sight, out of mind. And I my big philosophy is that, like when I messed up procedure, it's 60 percent my fault and 40 percent of the nurses fault. And I mean that because a lot of specialists put it on their nurses like, oh, they didn't mean oh, they didn't call me.

And I tend to be more like, well, where was I? If I'm in my office, I need to be looking at the board. I need you watching orders. I need to see who's coming in and out. My job is patient care. My admin duties come second. And there will be times that you miss procedures, and that's just the way it is, but I think.

Being present on your unit and, you know, was. Probably the most helpful thing for me in the beginning. Nurses can be hard people to get in with their very goal oriented, and they're very they have their way and they like to do it certain ways. And so I think for some people that can be intimidating, especially emergency room nurses, but. I think showing them that you're a part of the team is really helpful.

I also think doing things that are not, quote unquote child life jobs is really helpful.

You know, I try to remind students that, like, we're never too good to get families water and get families blankets and to help clean up. Yeah, and that's the type of stuff that nurses appreciate, and so when they see like, oh, hey, she's helping out with this and she said, my family how to get to this place where people, if they like you as a person, that they're going to want you around for the Ivy and the other procedures.

And so I think I just really emphasized so much to students that, like, when you get your first job, you can't do your job without the nursing staff. If you don't know that a procedure is happening, that you can't be there for it and then you're not doing your job. Right. Right. And so just really focusing on trying to have a good relationship and you don't have to like everybody, but it's helpful when you like at least the majority of them and they like, you know.

Yeah, and just knowing that you can rely on them, and I think for me, partially, I'm so appreciative of my staff and I'm so reliant on them is because I work hours that I hardly ever see other child life stuff. I don't see child life stuff on the weekends. I see child stuff for a couple hours during the day and then I by myself.

And I know that I can go to them like I I'm off today and I talk to the Picchi specialist about the death that happened last night. So I have my job, my staff. But, you know, when it's nine o'clock at night. It's my nursing staff that I have, and that's all I rely on to kind of help get through the night and.

I think also it helps. When you have those good working relationships, that helps your job satisfaction. We judgmentally will help you burn out less quickly because we'll all burn out one point or the other, but, you know, helps to fill your cup at least a little bit. We'd like to think that's way far down the line.

Oh, gosh. Now, I think it's a revolving door. I mean, oh, no, you burn out and then you fill your cup and then you're back and then you're back. 

Are you the only one during the night shift?

Are you the only you are? How terrifying is that? It's so bad. I think I'm terrified for you now. And this is my first job to my first certified job. 

I no, it's not bad. I think just knowing how to prioritize is really helpful.

My position is funded by the ED, there's two of us and the need that we cut, we do seven day week coverage and so we only overlap like one day a week for a couple hours. So from a funding standpoint, like, my priority is to be embedded with the population because that is who is paying for my position.

But if there's a death in the picture, I'm not going to, you know, not do child life there, too, but when it comes down to it, my main priority is the dead and working with those patients and families and then assessing what comes in as need be, typically the other units, the impatient Jenkins units, the pick you.

Tend to be peculiar, but tend to be a little slightly more predictable than the 80, so I can get a report out from those specialists during the day of how this procedure might happen. This kid is getting this line removed. This kid going home, which can kind of help shape how I think my night is going to go. But of course, even the peculiar deaths happen. Emergency procedures need to happen.

And so. They sure know how to find me. They call the Ed begging for me to. Yeah, I just try to balance and I communicate as best I can with the team of like, hey, I'm going to be in Kikue, I will let you know how long I think I'll be up there when I get there, that sort of thing. But it's really not as scary as I think some people think it is.

It's like when you're in the moment, you just kind of got to go with that and you don't have time to be like, oh, crap, how am I supposed to do this? You just got to do it. Your adrenaline kicks in. Yeah. 

If you have the ability to go back to school and learn something to help better your career, what would what would you do? What would you learn?

A:  So many things, and I feel like I have a really great education and I think. Sometimes from an academic standpoint, we focus so much on developmental levels and what are the stressors for that developmental level? And so what are going to be the coinciding interventions and.

I feel like, you know, we don't put enough emphasis on how to work with interdisciplinary team. We don't learn like what do you do when you're in a room with the patient and we're doing sutures and the resident keeps telling McCan that they don't feel anything and the kids like. But I do feel it in the residents like, well, no, you don't you're not like what do you do in that moment? How do you talk to the resident after that?

That's the type of stuff that and I think those are the things in general that you just have to learn as it happens. Just think from an academic standpoint, we do students a slight disservice because we don't even. Broke at all of how do you deal with not even bad relationships, but like just difficult one?

Me and my co-worker, my co-worker had done lots of education, like team building stuff in the 80s. We did a lot of stuff for child life, mom and. We put a lot of emphasis on continuing to educate staff, even staff that know all about comfort zones, but like let's talk about why nurses hate. Let's just broach the uncomfortable subject. Most nurses hate them. Let's talk about why how can we make this better?

Yeah, and I just think from a student standpoint, like. We never talk about that kind of stuff, and so I think for me that was something I really had to kind of learn on the go. Like I always give the example to students like, you know, you learn in class all the great comfort holds and you were in the room with the family and you're prepping the family and you have this great idea for this positioning. But what do you do when the nurse is like, no, I don't want to do that. I'm not comfortable poking a kid in that position.

Right. You have that conversation and that's never talked about, at least for me. That was never talked about. Right. More. And so just kind of how to address my goals and nursing goals and doctor goals and how they can all work together to best serve the families, so.

Yeah, I'm very big on staff. I can see that and it really shows yeah, it's a good thing though, I promise. Yeah, yeah, yeah. 

What do you want to tell me that I haven't asked or I should keep in my mind or anything like that? What do you want to tell me? 

A:  Oh, gosh.  Do you plan on becoming a child life specialist someday when I grow up? I think. A lot of students and I mean myself and my friends and a lot of students look at my friend.

It's like magical to a lot of them and. You know, it's bubbles and light ones and these beautiful interventions, and you're the unsung, the unsung heroes of the hospital and you see all the amazing posts from the CLP and all the great interventions that we highlight. But 80 percent of my days are not bubbles and light ones and.

That sort of thing, and so I think. That is why we have had so many child life specialist burn out of this job and transition onto different jobs because we go in with a preconceived notion of how magical and wonderful it's going to be and. For some people, it ends up not being that and I think putting emphasis back on that, you're working in health care with really sick kids, but also you're working with families that are often at their lowest points on their worst days. And so just keeping that in mind, when you're going through schooling and you're going through internship and there are great days are great, perfect textbook child life interventions that happen. I'm like, wow, that kid beautiful with Ivy.

But last night when I got out of the Pigou, I walked down downstairs to the ED and my staff was getting ready to do three rape kits on three kids. And I deal with sexual assault all the time in the 80s. And that's just not something that we talk about from a student standpoint. And there's nothing magical fun at all about any of that.

Yeah, and so I think just knowing that there are really not that it's not because I do love what I do, but they're really, really hard aspects of child. Yeah.

And so I think sometimes when I have students, I've had a couple students shout at me for certain days and have had an intern for her like elective week, I think sometimes there's a disconnect between students and what it's like to actually be practicing. And I can only tell that by the questions they ask, not that they're inappropriate, but they sometimes tend to be off base.

And I have students ask me all the time, when do I do medical play? How often do I do medical play? What are your medical things? And it's like always so funny when I get asked that, because I'm like, it's a good month if I do one time. And I love my job, especially when I was a little kid, that's when we did, we did and I love it. But medical play is I have my IV catheter on my dad and I show the kid the catheter before we do the poke. And that's about for moment.

And that's what it is. And so. When you get ask questions like that, it's always kind of a bit of a hint of like that's not that's so far off of what I get to do every day and when especially does get to do it. It's it's a Facebook post and it's an article. And it's this amazing thing. It's not a every day.

Yeah. Yeah. And and maybe it maybe it is for an impatient specialist on a giant PEDs unit, I don't know, or an oncology specialist that has kids that she can form really good relationships with. But it's not that way for everybody. Yeah, so just knowing that job life looks so different, depending on the hospital you're at, city you're in. The unit you're on, if you got like Baltimore would be different than New England. Yeah, yeah, I, I 100 percent think it is, I think to.

I work at a hospital within an adult hospital. And I do my internship at a freestanding children's hospital, and there's just such a difference between a freestanding children's hospital and an adult house, a children's hospital and inside of an adult hospital. And. Comparatively, we're a poor hospital. From my standpoint, we do not we do not have a large budget.

You know, we don't have music therapy, we have one art therapist that works part time. We have one shot, one full time job, a life assistant. And my internship had nine full time childlike assistants.

They had 30 child specialists I work with. Five other child life specialists and so I think. Now, to say that it's easier, but I think there are aspects that are easier in child life when you have all the resources and all the funding and you can refer your patient to music therapy, art therapy, pet therapy.

And you have. The backing of the president and all the higher ups of the children's hospital, because everybody at that hospital is children focused, right? Nurses at an adult hospital, which is not the way it is first. And then, you know, we are not we do not bring in the money for this hospital.

Yeah, and so just being mindful of. Kind of where you want to work and the environment you want to work and not that you get tons of choices as a child life specialist, because there's not always tons of options out there. But just knowing that, like your internship experience will be different than your job experience, then you're 10 years from now job experience, but just like taking it as it comes and be willing to change and grow and adjust as need be. OK, I have one last question and.

It's not even on my list, it's just something that intrigued me from talking to you. So what are your play interventions? What are your favorite ones? What did you learn about them? Because I know you don't get to use them much, so.

A:  I would say my favorite when I in a perfect world. Is what I can do, medical play like very traditional medical play with a kid after an IV placement, I think sometimes like the full on child life prep with the doll and the supplies. And the step by step isn't always the most helpful for a kid whose anxiety is already up here. Right. And isn't always possible from the pace of the either. So.

You know, I get the kid through piece by piece information, get him through the I.V., he and then letting the kid return to baseline, calming down and then me coming back in later and being like, hey, I have this doll. Do you want to do medical play with me? How about you want to play I.V. with me in this doll and then letting them manipulate and work with those materials in a way less threatening way? You know, the nurse is outside the room getting stuff together, waiting for me. I'm done getting all the tubes for the blood.

And he's looking and seeing what she's doing. The scary part's over or done. And I feel like I've learned that sometimes the debriefing afterwards is way more important than the prep beforehand.

Because I can tell a kid I remember one time and this five year old who I was prepping him before his IV and right when they were tracked the needle and adjust the catheter stays. And I'm like, OK, like like just the straw parts in your skin is like, OK. And then I came back later to check on him and he was like really moving his hand. And I was like, is there a needle in your hand? He's like, yep, there's a needle there. And I was like, You missed everything that I talk to you about and prep because you were so fixated on what was happening that we need to backtrack now. We need to go through it again.

And so I was able to do, like, full on that with him, with the doll and all the teaching staff and show him hands on, you know, like there is no there is no need all that stays and.

Yeah, and so I think those those little like aha moments for kids when things have calmed down for them in the 80s and they can relax a little bit or some of my favorite. But I mean, I'd love to do regular play, too, I wish I could do it more. I think that's how covid has impacted me a little bit, because before I can pop in and out of rooms really easily, check out so and so I'm back to the other kid. But now it's slow me down a little bit when I have to be mindful of the PPE I'm wearing.

Be mindful of going in to just say hey to this kid is really. Not that I waste to do that, and just being a little bit more mindful of that has kind of slow me down, but hopefully one day we can go back to being a little bit more relaxed. I'm hopeful that sooner rather than later. Yeah, this is terrible. OK, that is all of my questions.

During my undergrad YDEV courses as well as many of my social work courses, we talked about race.  In particular, YDEV talked about how our race impacts our identity... While looking back at Shayla's interview I am reminded of my YDEV courses and my personal identity.  I am a white woman who grew up in a wealthy community with little diversity and a great school system.  I will have a masters degree and my husband and I own our own single family home.  I can remember growing up in a single parent household that I did go without the fanciest new sneakers and extra frills for my locker but I never went without food, shelter and the basic necessities.  Even while in the hospital, my mother was able to take time out of work to be with me; she still was paid.  The housework, yard work, and general upkeep of things was done by the generosity of neighbors and friends.  Family regularly sent warm food and gift cards to us to keep us fed without the struggle of gross hospital food.  And my very extensive and expensive hospital bills were fully covered through my double coverage.  I am extremely thankful and fortunate for the things I have, but in talking to Shayla it is crazy to me to think that some of her families are just thankful for the blankets and snacks that she can provide for them.  I keep saying it but the difference between Shayla talking about the basic needs of the population that she works with is so contrast to the work of the other three interviewees.  Previously my thinking of a child life specialist was very focused on making the children and families in the hospital happy and keeping their spirits up, as Shayla says, the sunshine and rainbows of child life.  While now I see that they are so much more, especially given their demographics.  A child life specialist has the power to make a child and family happy with a simple hug and a warm blanket.  

Shayla's interview also made me think back to my time in my social work internship at Metcalf Elementary School and the volunteer work I did at Chester Barrows Elementary School.  Chester Barrows is one of the lowest income schools in Cranston Public Schools, while my mom was principal there 90% of the kiddos had free or reduced lunch and at least 65% were of color.  Myself and my mom, both white women loved working with this population.  While I volunteered there I spent a lot of my time in a first grade classroom working with a particular boy who just needed some extra support.  He had a very complicated and upsetting family home life and that often showed during his time at school - thus my mom requested that I work one-on-one with him while I was there.  I often spent my entire day sitting with him and working on not only how to cope with his aggression, but also working to inspire his creativity.  He loved to draw - and I would make sure that he and I got to do so as much as possible.  No one else in his life showed interest in his work or gave him time and space to be creative because his parents were always working.  This simple gesture really helped him out of his shell and created a bond that I still cherish.  While at Metcalf I worked heavily with the Alternative Learning Program where most of the children were brought in from a group home and had significant behavioral problems.  About half of the students I worked with were of color even though most of the building as a whole was predominantly white.  I remember sitting in an IEP meeting about a student who was of color and his grandmother was his legal guardian.  She expressed right in front of me and my supervisor that she did not feel as though I was a good fit to be working with her grandson because I could not relate to him in any way.  And she was right, I was a white woman who appeared to have no learning disabilities or any other issues of any kind medical or physical.  Her grandson a biracial student had outstanding delays in his learning, had been hospitalized multiple times at Bradley for emotional and behavioral issues, and had hearing aides.  Grandma was only seeing my external identity and was shocked to find that I was able to connect with the student - not because of my identity but because of my age.  Unlike the other adults around us, I was able to talk to him and relate to him because I was much younger.  I feel as though this is a very interesting aspect for Child Life - are child life specialists more effective the younger they are?