Running head: PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 1

The Role of a Child Life Specialist in Hospitalized Children

Megan Lockard & Bailey Nihsen

University of Nebraska at Omaha

Dr. Toller

December 10, 2018

PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 2

Abstract

Hospitalization of a child is a stressful psychosocial event for children and their families. For the

child, fear of the unknown, separation, and unfamiliar faces increase anxiety. The question arises

as to how child life specialists view themselves as a major role in patient care. Child life

specialists play an important role in health care by helping children cope with their medical

procedures. There are different techniques that child life specialists use to help hospitalized

children stay relaxed and reduce their pain. These factors include using developmentally

appropriate language and clear explanations, therapeutic play, positions of comfort, imagery, and

music. The findings suggest that providing information about medical equipment and procedures

through developmentally appropriate language and clear explanations, and therapeutic play,

show the most impact toward reducing pain and distress in hospitalized children. However,

positions of comfort, imagery, and music also are very helpful in reducing pain and distress in

hospitalized children.

​ usic, imagery, therapeutic play, position of comfort, developmentally appropriate

Keywords: M

language, clear explanations

PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 3

The Role of a Child Life Specialist in Reducing Pain and Distress in Hospitalized Children

When children are hospitalized for either a simple procedure or a serious illness, they

have a variety of concerns. Hospitals employ child life specialists to provide play-based

psychosocial interventions for children and families. Child life specialists play an important role

by “providing care designed to minimize stress, encourage normalization, enhance preparation,

and promote children’s normal growth and development” (Turner & Fralic 2009, p. 40). These

professional child life specialists play a crucial role in the healthcare setting, as they can provide

emotional support for both the family and the child (Cross & Johnson 1991). However, in order

to provide for a child, a child life specialist needs to know what fears the child may have prior to

his or her procedure. Child life specialists use a variety of factors such as developmentally

appropriate language and clear explanations, therapeutic play, positions of comfort, imagery, and

music to determine the situations in which the children feel uncomfortable. Recent studies of

child life interventions have indicated an increase in comfort (Barkey & Stephens, 2000) and

decrease in fear (Lacey, Finkelstein, & Thygeson, 2008). The purpose of this study is to

understand the meaning child life specialists give to their role in patient care.

Literature Review

When children are put into the hospital, they are unsure of what may happen to them and

may have difficulty understanding the terms used by medical professionals. Through the use of

developmentally appropriate language and clear explanations, children understand why they are

in the hospital and what is going to happen during their stay there. A way to facilitate this

understanding is through play, which is a natural method of learning, development and

expression of feelings and concerns (McIntyre, 2005). Play is the language of children and the
PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 4

language of consciousness. When medical terminology is used while explaining procedures to

children, it can be overwhelming and make the child feel even more distraught. Child life

specialists act as a translator for the child to ease the explanation process. The child life specialist

will explain what will be happening during their procedure either through pictures drawn by the

specialist themselves or on an electronic device. They can also use themselves as props to show

the child what will be occuring in the operating room so the child can avoid any distress prior to

the procedure.

In order to ensure the child gets the most out of their time with a child life specialist, a

variety of techniques are used to explain medical procedures based on the age or development of

the child. For younger and less developed children, drawings help visually explain where an

operation will be taking place on their bodies. If the child still does not feel comfortable, it also

helps when child life specialists draw pictures of the operating room, showing everyone who will

be in the room during the operation. The older and more developed children may find drawing

pictures to be too young or playful, therefore, showing pictures on an iPad or laptop is just as

useful. Another way to help explain what is happening is by having the child’s family or parents

talk to the children about their procedure before coming to the hospital. Parents should talk to

their children as if they were in a normal setting, so they do not feel out of place.

Child life specialists do what they can to make children feel like they know what is going

on. In many cases children have been explained details about their procedure, and shown pictures

of what they are being operated on, and still fail to understand what is occurring. It may be that

they are not as mature for their age, or they are just more frightened than they are expressing. If
PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 5

children are not able to understand words, or they have a difficult time understanding what

doctors mean, the next factor, therapeutic play, can lessen their fear.

Therapeutic play is a set of activities that are designed according to psychosocial and

cognitive development of children to facilitate the emotional and physical well-being of

hospitalized children (Liddle, 2014). Therapeutic play is effective at addressing the emotional

responses of children during hospitalization. When children are less fearful about their

hospitalization, they experience greater emotional well-being and less psychological distress.

Therapeutic play interventions address improvement in the child’s affect, anxiety symptoms,

level of distress, depression symptoms, regression aggression, and fear, as well as enhanced a

child’s ability to cope (“Therapeutic Play in Pediatric Healthcare” 2014). Child life specialists

bring a calming use of play as a tool to help children cope with their specific situation.

Play gives children a sense of normalcy; it provides an outlet for energy and allows them

to interact with children their own age (Cross & Johnson 1991). This type of play not only allows

the children to feel normal, but also allows the child life specialist to see where the anxieties lies.

Even if children do not verbalize their fears, play allows children to express their emotions. A set

of activities are designed according to psychological, cognitive development, emotional and

physical well being of hospitalized children.

Therapeutic play utilizes a variety of different toys or tools that may reduce the pain and

distress levels in pediatric patients. Depending on the age or gender of the patient, dolls or trucks

are used to help lower these levels. Even in male patients, dolls sometimes are used to show the

patient what a certain procedure looks like and where it will be occurring. Toys such as building

blocks, trains, board games, and stuffed animals are also used to comfort children. If a child
PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 6

brings in his or her own toy, a child life specialist will involve it in the play that its owner is

currently participating in. In addition, play allows the children to use their developing

imagination to help relax their overacting brains.

Even the form of music meditation is a very important factor in trying to relax a child.

The calming sound of a mother’s heartbeat, rain falling on the pavement, or the soft sound of a

summer storm act as the main themes of a relaxing meditation. Many times music meditation is

not only for the bigger kids, but it also can help the infants in the Neonatal Intensive Care Unit

(NICU) to grow stronger and develop faster. The infant grew inside the mother’s uterus listening

to every sound the mother made; so her voice and her heartbeat soothe the baby and help the

baby to grow like it was growing in the womb (Lacey, Finkelstein, & Thygeson, 2008).

Methodology

The purpose of this study is to understand the meaning child life specialists give to their

role in patient care. The practices that child life specialists take part in, ultimately help reduce the

pain and distress in hospitalized children. While choosing to do qualitative research based on

child life specialists, we want to further explain who child life specialists are, and how they can

help reduce the pain and distress in children. Often times child life specialists go unnoticed, and

we want to show just how much of an impact they can make on patient care. Not a lot of research

has been done based on how exactly child life specialist go about reducing pain and distress in

hospitalized children, we thought it was necessary for this area of specialists to be explored.

When selecting the participants in this study, we addressed where child life specialists are

located at. Almost every single child life specialist works from a local children’s hospital. With

that, we have decided to spread out our data and interview child life specialists from around the
PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 7

United States: West coast, East coast, North (more midwestern) & South. This allows us to ask

four child life specialist on how they view their role in patient care. We will locate the child life

specialists by searching through children’s hospital staff websites. Then we will email them over

a survey with select questions that will help us address how child life specialists view their role

in patient care. The way we will go about analysing the survey questions and answers will

depend on the answers we will receive. By having all child life specialists answer our survey

questions we should be able to see some type of common ground in the verbage the specialists

use. We will use those key concepts as the themes that are being represented. Those themes will

then help determine how child life specialists view their role in patient care. The following are

possible questions we will ask our selected child life specialists:

1. There are many careers involving service to and advocacy for children and families, why

have you chosen to pursue child life?

2. Please describe a specific experience you’ve had with a hospitalized child or family that

was significant for you?

3. An 8-year-old child is having an IV start. The previous IV start took multiple sticks. The

child’s parents had to go to work and the child will be alone for the procedure. What kind

of role do you as a child life specialist play in a situation like this?

4. What is the most rewarding part of being a Child Life Specialist?

5. Provide an experience in which you were sensitive to someone’s needs or feelings.

6. How did your helpfulness affect your work environment?

PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 8

Results

Child life specialists are not given as much props and attention in the medical and patient

care world as they should. Child life specialists are not trained to give shots, or to put a child

under a knife, instead they are trained to give psychological support to a child in a stressful

hospital stay or a doctor’s visit. In this short qualitative study, a few themes were mentioned

throughout the interviews process with four excellent expert child life specialists including,

support, advocacy, education, and sensitivity. For confidential purposes, the names of the four

child life specialists will not be disclosed.

According to the Children’s National Health System they describe child life specialists as

people who “provide psychological preparation for medical procedures, as well as emotional

support before, during, and after treatment.” Support is the biggest contributor to any patient care

role in the hospital setting. However, to a child life specialist the word support has a whole new

meaning. Support starts with the first moment they are assigned a patient. The CLS gets to read

the chart, but often times it is hard to tell what exactly a child or parent’s reaction will be to the

stressful, tense atmosphere of a hospital. In one of the interviews that was conducted, the child

life specialists that has been on the team for six years worked with a patient she was assigned in

her first year of the job. The patient has autism and anxiety. When she first was assigned to him,

he was very anxious about dental visits and would hardly ever sit still. The child life specialist

that was there to support him during this stressful and anxious moment and helped him become

the young man he is today. Six years later, that patient only needed very minimal

developmentally appropriate support was needed during his check up.

PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 9

When a child is in so much pain that they cannot speak or physically show what needs to

be done that is when a child life specialists comes into play. According to almost all of the

interviewees, advocacy is a big role of a child life specialists. As stated before, if a child is

unable to fully express the level of pain they are in to a nurse or a doctor, a child life specialists

will come in to save the day and assist in advocating the patients needs to the bedside nurse or

doctor. In many cases a child is afraid of a nurse or doctor because of the situations they have

dealt with. However, a child life specialist is there to bring the fun and release some of the

tension in the hospitalized child. So, if a nurse cannot seem to get the child to reveal his or her

pain levels, the child life specialists can easily create a game out of it to find out.

Another case, which happened to be one of the interview questions, was a hypothetical

case where a child was poked multiple times for an IV. The next time the IV had to get placed,

the child’s parents were at work and the child life specialist was the only one present aside from

other medical staff. The role of a child life specialist is to advocate for the patient in situations

such as this by giving them a voice when it is not easy, especially for a child, to express their

feelings or pain levels. In this case, the child life specialist would distract the child as the IV was

being placed, and then if it still was not being inserted correctly the child life specialists has

every right to ask for a professional team to come in and insert the IV into the child. This is

because the child life specialist looks out for the needs and mental health of the child versus the

bedside nurse who just wants to get the child healthy, which is obviously important too, but a

CLS can get the health of the child in good shape along side the mental health by allowing the

child to not feel any distress about the IV or other medical procedures they may later have to

endure.
PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 10

Another common theme that was found throughout the study from CLS was the

education of patients. Condensing confusing medical rhetoric into understandable terms for

young children is one of the key roles of a CLS. Since the ages of patients that CLS see ranges

anywhere from infants to later-aged teens, the terms that are used vary based on development

levels of the child along with what terms they are already familiar with and what is able to be

taught as their stay goes on.

One of the interviews conducted speaks of how educating patients not only contains

education of medical terms, but also using education with preferred learning styles and

techniques of that specific patient. Using things such as dolls to show where an incision might

take place on the body helps patients who are younger and more visual. The child life specialist

expert in the interview also stated that activities such as interaction with doll or other toys give

the child a sense of control over the situation. This technique allows the child to not only

understand what is going to happen in words, but also giving them the opportunity to physically

understand by drawing, touching, or re-enacting how their procedure will occur. This helps the

child become more at ease about the procedure and to top it off, the child then feels more

self-confident. By allowing a child to practice their procedure on a doll, the child life specialist is

now able to take away any distress or anxiety about the unknown. This results in a better

outcome of the hospital stay.

Education also includes educating the medical staff of a patient’s needs and coping

strategies. If a parent is unable to be alongside the child and the child life specialist is unable to

be by the side of the patient right away, it is very important for medical staff such as the bedside
PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 11

nurses to understand how the patient deals with and understands a procedure. This will overall

make things run smoothly for both the patient and staff.

Parents are also included as part of the education process for child life specialists.

According to the interviews conducted, parents play a huge role in child life specialist roles as

well. Making sure parents understand what is going to be happening to their child in terms they

actually understand, not confusing medical rhetoric, is highly important to the overall process

because parents are the ones who not only take the burden of having a sick child home with

them, but also are the ones who are constantly providing support to the child when the child life

specialist is not there. By educating parents also gives them a sense of relief when they do not

happen know exactly what is going on with their child and how to help their child feel less fear

or pain. Often times parents actually start stressing out the child even more than the child is

because the bedside nurse or the physician are not helping the parents understand in terms they

can actually understand so the parents start to worry and giant words that are being throw out

during the discussion.

The final theme that is presented throughout the four interviews is sensitivity. Sensitivity

is present in the everyday life of child life specialist considering they deal with patients illnesses

to trauma victims. Being sensitive in this case means that the child life specialist is constantly not

only respecting the patient and their family’s wishes, but making that personal connection by

treating the patient like a human being, not another room on the floor.

Being sensitive in terms of being a child life specialist also means taking care of patients

to the best of their ability. One child life specialist that was interviewed described using

sensitivity by using the personal connection they have with the patient and making sure all of
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their needs are met. This shows that every child is approached and taken care of differently in

each individual way because no two patients are alike. Sensitivity makes sure that every child is

receiving extraordinary, personalized care.

In our conducted interviews, one child life specialist was in a situation where a young

patient had leukemia and had a short time to live. The mother of the child was not comfortable

with leaving her child due to her failing health and fear that she would not be there if she were to

pass. In this situation, the role of the child life specialist was to respect the mother’s point of

view and assure her that her daughter was in good care in the hospital’s hands. The theme of

death and sensitivity go hand in hand throughout this study due to the harsh nature of death in

sick children. A child life specialist is there to make sure the parents know that death is a reality

in some instances and help them get a clear understanding on it, but also help them with coping

with it when the time comes.

Discussion

The purpose of this paper was to understand the meaning child life specialists give to

their role in patient care. The role of a child life specialists is to help children decrease fear,

distress, pain, and anxiety during a hospital stay by using different activities such as play. These

practices benefit children who are in pain and distress. Four experts, who work as child life

specialists answered six questions to help better understand the role child life specialists bring to

patient care. What was found, gave child life specialists a role in patient care that cannot be

replaced. Child life specialists give meaning to patient care by taking the time to get to know a

child and his or her needs on an extremely

PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 13

Child life specialists have shown a significant amount in patient care because of the way

they support the patient and the family as well as being sensitive towards the patient and their

family. They also show tremendous significance because of the way they educate the child and

their families in the medical procedure that is occuring on their child. Education is done with

play therapy and developmentally appropriate language. Child life specialists play an important

role by “providing care designed to minimize stress, encourage normalization, enhance

preparation, and promote children’s normal growth and development” (Turner & Fralic 2009, p.

40). Having child life specialists in patient care-- they are helping decrease the amount of stress

in patients which will ultimately help their health improve quicker.

One limitation of this research paper was the time constraint. If there would have been

more time to conduct a study that had supporting evidence toward a specific factor or factors,

this could have resulted in a more accurate conclusion. Another limitation that falls under the

time constraint area is that there was not enough time to get ahold of child life specialist experts

because of the hours they work. Throughout the process of gathering data from the questions that

were provided, communication failed. There were several occasions where phone calls were

missed due to the schedule of students and the experts. Because of this, interviewing via email

was the best option for this study. Ideally this was not what would have been done with a longer

period of time to conduct this study, but it had to do.

A few other limitations arose due to the fact that the research is based on a medical

profession, because of HIPAA patient names and a detailed description cannot be provided.

Going into the study it was known that patient names could not be provided, however it was

unknown if the child life specialist name could be shared or not. Each specialists that was
PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 14

interviewed asked if their name could be kept private as well as their employer. The final

limitation that could be drawn from this research is that all four child life specialists all came

from different institutions around the world. The question that could be drawn from that is if

because of the area in the world, could the role of a child life specialist in patient care be

different. If the study focused on child life specialists from the midwest only, the results could

have been different.

Conclusion

Being hospitalized is a stressful event for everyone in the family ranging from the child

in the hospital bed to the parents next to them every step of the way. Child life specialists play an

important role in the hospitalization of children due to the fact they are the major source of

comfort, and allow these patients a voice for their pain. Therefore, child life specialists see

themselves as a huge part of patient care. Using different techniques such as developmentally

appropriate language, education of the patient, their parents and the health care team of the

patients needs, therapeutic play, and finally support of the patient no matter what, child life

specialists work to reducing pain and distress in hospitalized children. This study indicates that

there were two factors that were more significant and more impactful than the others.

Developmentally appropriate language and clear explanations, and support of the entire patient’s

family had the most significant results in the role of a child life specialist in reducing pain and

distress in hospitalized children.

PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 15

References

Barkey, M.E. & Stephens, B. (2000). Comfort measures during invasive procedures: The role of

the child life specialists. ​Child Life Focus, 2​ (1), 1-4.

Child Life Services. (n.d.). Retrieved December 6, 2018, from

https://childrensnational.org/choose-childrens/deciding-on-care/support-for-families/child

-life

Cross, W., & Johnson, A. (1991). The child care specialist: The role of child and youth care in

hospitals. ​Journal of Child Youth Care, 6, ​33-36.

Guided Imagery | Center for Integrative Health and Wellness | OSU Wexner Medical Center.

(n.d.)., from

http://wexnermedical.osu.edu/patient-care/healthcare-services/integrative-complementary

-medicine/guided-imagery

Lacey, C., Finkelstein, M., & Thygeson, M. (2008). The impact of positioning on fear during

immunizations: Supine versus sitting up. ​Journal of Pediatric Nursing, ​23(3), 195-200.

Liddle, M. (2014). Evidence-Based Practice Statement: Therapeutic Play in Pediatric

Healthcare. ​Child Life Council, Inc.

McIntyre, T. (2005, June 15). Play Therapy. ​www.BehaviorAdvisor.com​. Retrieved February 16,

2015.

Turner. J., & Fralic, J. (2009). Making explicit the implicit: Child life specialists talk about their

assessment process. ​Child & Youth Care Forum, 38, 3​ 9-54.

PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 16

Appendices

1. There are many careers involving service to and advocacy for children and families, why have

you chosen to pursue child life?

E- I chose child life because it was the perfect blend of my interests in teaching,

psychology and the medical field. I have an educational and/or vocational background in each of

these areas and all are of interest to me. I am able to use my skills from each of these domains in

my daily work as a child life specialist.

M- Child life specialists are seen by children as a friend or companion in good times and

bad. Doctors, nurses, and other specialists seem scary and associated with pain whereas CLS are

seen as someone who brings fun, joy, and healing to a child. CLS are there to have fun and make

the most of a scary situation!

N- My background started in early childhood development and throughout years of

working within that field, I developed a strong interest in the specific work child life specialists

do. The medical field was always a secondary choice for my career path behind ECD and I

decided to combine both fields and start my work as a child life specialist.

C- I chose to become a CLS because the position offers me to take something as

complicated and hard as the truth of a diagnosis or pain of the child and turn it into something a

little less traumatic for patients and their families.

2. Please describe a specific experience you’ve had with a hospitalized child or family that was

significant for you?

PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 17

E- Last week, I saw a patient that I've been working with since I began my career as a

child life specialist over six years ago. I had not seen him in over a year. This young man (who is

now a teenager) has autism, anxiety and sensory concerns. He used to have a really difficult time

with most of his visits, and I worked with him extensively related to his ability to cope and

cooperate with blood draws and dental cleanings. When he saw me walk into the clinic, he

galloped down the hallway with a huge smile on his face calling my name. He coped beautifully

for his dental treatment (a filling) with minimal support; I just held his hand and provided

developmentally-appropriate preparation throughout. It was wonderful to see how far he's come

in his ability to cope and cooperate with medical experiences, and it felt pretty special that he

remembered me so fondly and was so overjoyed to see me.

M -Child having a surgery and a CLS provided bracelets and arts/crafts to distract child

before procedure.

N- I have been seeing a patient with Osteogenesis Imperfecta or in developmentally

appropriate language, brittle bone disease for over eight years. Brittle bone disease is where the

bones in a human body are not as strong as they should be so they break upon a small injury.

This girl was six years old the first time I worked with her as a CLS and now she is 13. Over the

years I have witnessed her be in the worst pain I have ever seen in a patient to crying because she

was laughing so hard. I see hundreds of patients a year, but this girl has stuck to me through the

years. Her bones have become slightly stronger due to treatments, but she still shows up in

outpatient a handful of times a year. The sad part is that she understands her pain and can

translate to the other medical professionals so I am starting to become unneeded from her care. I

still try and sneak in when I have a second to snag her a pudding cup. As a CLS, it amazes me
PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 18

every day how patients especially being children are so strong and resilient. I get emotional when

I get to walk through life with patients and see them grow in their confidence because of my

help.

C- One of my favorite roles of being a child life specialist is helping children understand

anesthesia. Many times I get the questions like “how long will I be asleep and what will it feel

like when I wake up” or “will other people be watching me during the surgery” I love these

questions because I get to play with them during this time. My CLS team always takes in masks

that smell like different things such as blueberry and cotton candy. My personal favorite is the

cotton candy. Anesthesia is a scary thing and to be put asleep medically is a very unusual

experience. I tell patients is just like falling asleep at night but its done with a magic gas and

when you wake up from the operation it will feel just like you are waking up in the morning for

school. I am still new so I haven’t gotten to work with patients that need significant patient care,

but I find joy in getting to explain the process of anesthesia to children because they find it so

interesting even if they are so anxious.

3. An 8-year-old child is having an IV start. The previous IV start took multiple sticks. The

child’s parents had to go to work and the child will be alone for the procedure. What kind of role

do you as a child life specialist play in a situation like this?

E - I think in this (and most) patient situations, the child life specialist plays multiple

roles, including the following:

-Detective: Finding out what will help make this situation better for the patient, whether

that be a certain approach, specific distraction item, etc.

PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 19

-Advocate: Speaking up for what this patient needs with the medical team - that could be

pain management, a vascular access team with specialized equipment to place the IV (versus the

bedside nurse), a comfort position, etc.

-Teacher: Educating the patient about the procedure in a manner that's appropriate to that

child's level of development and preferred learning style; involving the child in creating a coping

plan for the procedure; providing the child with appropriate choices and a sense of control

related to the procedure; etc.

-Support: Since the parents are unable to be present, as the child life specialist I would

step in to serve as the primary support for the child in whatever manner the child and I had

determined would be best when we creating the coping plan together

M- A CLS is there to comfort the child especially in times where the parent/guardian

cannot be there. The CLS is a comforting smile and provides reassurance for the child that

his/her parents will return and that s/he is capable of overcoming the struggle. A CLS can

provide a parent with time to get away, run errands, work, etc and leave child in good hands.

N- In this sort of situation, and many others just like it, my role as a CLS is to make sure

the patient is comfortable and understands what is going on. If the parents are not able to be

present, my job as a CLS is to comfort the child and be a familiar face in the room while

surrounded by medical staff.

C- In this situation, a CLS is there for support for the patient. It is not uncommon to have

a patient who is not attended by their parents, especially if the patient has a long-lasting

condition. As a CLS, I would provide comfort such as understandable language and coping

strategies for the patient as well as assuring them they can do procedures such as this without a
PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 20

parent or guardian present. This also gives relief to parents knowing that the patient has

developed a sort of understanding and comfortability with their stay.

4. What is the most rewarding part of being a Child Life Specialist?

E- I would say the most rewarding part about my job is helping a child and family get

through a challenging medical experience that they thought they would be unable to accomplish

(or maybe were unable to accomplish previously). However, with appropriate child life

preparation, support, and interdisciplinary collaboration they are successful and able to use

positive coping skills. It is so exciting to be able to celebrate those successes with the patient,

family and the healthcare team.

M- The most rewarding part of being a CLS is doing something many other people don't

have the stomach to do. A CLS is there in times of happiness and times of sadness. There is no

option to leave when times get tough... considering the child is the one truly suffering. A CLS

has to put on a brave face and provide love and support for the child at all times. Being a CLS is

much harder than it looks, because they have to deal with sickness and sometimes loss. It is still

very rewarding for the love and compassion that the CLS will leave with the child for the rest of

his/her life.

N- The most rewarding part of being a child life specialist is being a part of a patient’s

medical journey and seeing their views and attitudes shift about appointments, procedures, and

the overall hospital setting as time goes on. While it is still not the ideal setting for these

children, it is rewarding to see my patients take what I have worked with them on and apply

those skills to help with coping and so on.

PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 21

C- I find that the most rewarding part of being a CLS is the great privilege it is to help

patients and parents through perhaps the most challenging moments of their lives.

5. Provide an experience in which you were sensitive to someone’s needs or feelings.

E- I feel that as a child life specialist, being sensitive to someone's needs or feelings is a

big part of my job description! In each interaction with a patient and family, I strive to be

sensitive to their needs and feelings and help adapt the healthcare experience or advocate on their

behalf accordingly. Recently, I supported a patient for a clinic appointment that was quite

lengthy. The patient started to get really restless and repeatedly request (and attempted) to leave

the room. I could tell mom was tired and overwhelmed, so I offered to take the patient for a walk

while mom finished the appointment. The mom, patient, and provider all eagerly accepted this

proposal, and everyone had their needs met in this situation - the patient was able to get out of

the room and do something that was calming for him, mom was able to have a break, and the

provider and mom were able to complete their discussion without distractions.

M- Death is always hard to deal with. It is important to respect the wishes of the family

and be a strong, brave face to help them at all times. A CLS must be able to maintain composure

and be the bright light when everything seems to be falling apart.

N- Being a CLS, all the needs and feelings of my patients are to be dealt with sensitively.

Everyone deals with things in different ways and it is my job to respect that and understand how

to get patients and their families through the experience in the best way I can.

C- Being sensitive to a child and their parents needs are a huge part of my role as a child

life specialist. Unlike nurses who are there to just get the job done, I am there to see through the

patient care to the best of my ability. I am always looking for ways that I can help the family in
PAIN AND DISTRESS IN HOSPITALIZED CHILDREN 22

any way that I can. Whether that’s allowing them to get food from outside the hospital or

relieving them for a bathroom break. I cannot emphasise it enough. Being sensitive to any need

is my job. I have become a better person in the world outside the hospital because of the way I

treat my patients and their families in the hospital. Like I mentioned relieving a parents from

their duty of parenting for a bathroom break is sometimes the hardest thing. Parents are worried

about their child all the time and to step away for even three seconds could be life or death in the

hospital setting. I had a patient of mine who had leukemia. The treatments weren’t working and

the child was in failing health. Her mom did not want to step away because she knew that if she

did her daughter would not be holding anyone's hand and she would feel alone. I went ahead and

offered to stay with her daughter during the brief moment and hold her hand. I also talked to her

and told her how strong she was. Unfortunately that child did not make it out of the hospital and

passed away a couple weeks later.

6. How did your helpfulness affect your work environment?

E- I feel that helpfulness positively affects any work environment. When you enter a

situation with the approach of wanting to help, I feel that providers are much more receptive and

willing to accept your assistance or make the adaptations you are requesting for a patient or

family. I believe helpfulness is the best advocacy approach.

M- Being helpful is important regarding one's words and actions. When there are children

that are sick, one's words and actions are very important and must be well thought-out in

advance. Everything one says or does will be remembered so it’s important to act professionally

at all times and live life with a glass half-full. A CLS should volunteer to help out and come in

even when off the clock. A CLS is not a CLS just at work, but all-day every-day.
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N- Being helpful in the work environment as a CLS is extremely important on many

different levels. Working in the medical field, there are many people I interact with daily that all

have different needs from me. There are not only many different medical staff that I interact

with, but also the many different patients I work with that all have different medical backgrounds

and not one is the same as the other. Being helpful is minding those different needs of patients

and continuing to better their experience.

C- As a CLS, helpfulness is one of the key attributes of my position. My whole purpose

of being a CLS is to take the stress, anxiety, pain, fear and many other emotions children and

their families face away and turn these experiences into less traumatic ones.