1. Child Life Specialist and
Communication
Where are the Specialists?
Destiny Devone, March 12, 2012 (May 2, 2012), MWF, 12:00 ENGL 1200, Bradley

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Child life specialist are taught and educated to communicate with children, an area that is
lacking severely in the medical field due to the misunderstanding a child can have when hearing
medial terms and phrases; this can be even more frightening for a child who is suffering from a
malignant disease, such as cancer or sickle cell. Hospice care is important to terminally ill
children for recovery or acceptance because it allows the child the opportunity for a more
concrete understanding and psychological wellbeing in reference to the treatment. The
psychological being of an ill child can determine their response to treatment and Child Life care
can provide a more stable mental wellbeing. The field of Child Life Specialty can influence the
lives of many children but there are so few child life specialists in American; more college
students should be aware of the degree and take the opportunity to experience a career field that
could change so many lives. With Child life as a developing field, many more children are
getting the opportunity to experience and receive care and education that is specialized just for
terminally ill patients in their age range but, with only a little over three-thousand Child life
specialists in America currently, there are some areas where end-of-life treatment is lacking. The
communication methods and treatments being used could be targeting the disease but harming
the child psychologically; these barriers are in the way of treatment, which affect the parents of a
terminally ill child and how they see their roles in the child’s recovery. Child life specialist can
fix the apparent communication issue in children’s health care but, there are simply not enough
of them.
One of the greatest issues in Child Life and childhood hospice care is communication.
The language and understanding barrier between a fully trained member of a medical staff and a

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small child can be based on the level of education and age difference between the two
individuals. Child life specialists are specifically trained to deal with the terminally ill children
in society through education and programs that are in their terms, at a level of understanding that
they should be able to comprehend. The child life profession believes in evidence based practice
and feels as though communication is one of the greatest and most important pieces associated
with getting the child well or helping them understand and cope with their disease; sparking
more interest in this field, and increasing the number of specialist practicing in America, would
help to eliminate this issue in pediatric care. When preparing a child for a medical procedure,
there are three rights that the child life specialty profession feels that every child should have:
one, they should have the details of their procedure and all information related to it explained to
them in terms they understand two, they should be allowed to communicate and express their
feelings on the procedure and three, be in a situation where they can develop trust with the
medical staff (Koller, 2007). In an ordinary hospital or medical setting, will all of these
personalized opportunities for interaction be guaranteed? No. Child life programs are needed in
order to increase the availability of these programs to all chronically and terminally ill children
nationwide and all over the world. The spread of the child life profession means the spread of
understanding these children will have of their diseases; a spread of understand will in turn
increase the range of psychological wellbeing in terminally ill children.
Children in severe, constant medial situations have a fragile emotional state and these
children are afraid; they’re afraid of illness, of the procedures and surely, they are afraid of

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death. Only when the medical staff is trained to understand and teach, not only to the child but
to the parents, that there is an extreme need for love and understanding of the child’s perspective
of their situation and their concept of death, can the staff fully be able to support the family in all
aspects. Understanding the child and communicating their thoughts and beliefs of the situation
is an essential part of providing them with quality care (Krames, 2011). The child and the parent
may see death and illness in different ways; for example a child who was raised Christian may
not fear death as much since they are taught the concept of Heaven and even though their parents
have the same belief, their more complex understand and love that they have developed with
experience and age, will cause them to view the situation as the worse moment possible. Child
life specialists are equipped with the education to decipher the two different views and prepare
both the parent and the child for the anticipatory grief and hardships to come with the impending
medical procedures as well as reduced the fear and soften the impact the results may have on
both. In a study conducted at the Dana-Farber Cancer Institute and Children’s Hospital of
Boston, Massachusetts, one hundred eighty-one of one hundred ninety-four parents of children
with cancer responded to cross-sectional survey about the issues parents face when their children
are terminally ill. Two things the parents stressed about the most where ‘peace of mind’ and
‘sense of purpose’ in the child’s life and treatment. The finding of the study indicated that the
medical staff can increase the parents’ peace of mind by including prognostic information,
quality medical information and facilitating parents’ trust (Mack, 2009). Not only are Child life
specialist trained to talk to children, but they are well trained to communicate to parents as well.

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Child life specialists work towards many goals, one of which is understanding; an
understanding of the disease for both the parent and the child, and then an understanding to the
parents of how important they are to their child’s recovery or coping situation. Parents who are
not able to cope with a stable peace of mind experience the same distress whether the child was
diagnosed one month or one year ago but many are able to begin the coping process when they
have a closer relationship with the medical staff (Mack, 2009). In this situation, who would be
more opting to giving personalized attention to the child as well as the parent: a physician or a
child life specialist? Though physicians will most likely be the ones to discuss the child’s
prognosis with the parents, a child life specialist will expand on the information the doctor has
given along with additional emotional support and suggestions that the parent can follow in order
to play a big role in their child’s recovery and emotional well-being; parents have a greater
chance of feeling greater peace of mind when they have had the opportunity to have the
treatment, diagnosis and many other aspects of the child’s illness, especially if they are
approached by someone with a friendly, peaceful demeanor (Mack, 2009)
Parents feel more secure when they have communication with the medical professionals
and education about their child’s disease because they have to make very difficult decisions
about their child’s treatment and affairs, some of which could determine how long they live.
The difference in hospital care, and the more personal approach of hospice care or specialized
care provided by organizations such as Ronald McDonald House, is palliative care which aims to
improve the quality of life, not just treat the disease; this care provides assistants to a physical,
psychological, social and spiritual need that standard medical facilities do not offer

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(Aschenbrenner & Winters, 2011). In a hospital setting, usually it is the nurse who has the
responsibility of providing the more personal touch but, nurses are stretched thin with
responsibility since they have so many patients; with a child life specialist, who has the job of
providing personal communication and education, there would be no need for rushing or for
quick attempts at making personal time for the patient.
So, why are there so few specialists? Out of the fifty states in the United States, only
twenty-six have universities that offer child life specialty as a program; some of these programs
are associate or certifications that go along with another degree instead of a bachelor’s degree.
Of all the child life programs available in the US, only thirty three are actual child life degrees or
an undergraduate degree with a child life concentration, the others are child life assistant degrees
that the child life council doesn’t officially recognize as a program for their department nor does
it allow the student to become certified as a child life specialist after completion. On average,
each state that offers a child life degree only had two or three colleges that had the program; in
the state of North Carolina, East Carolina University is the only college that offers the child life
degree. Expansion of the child life program to other universities would be an essential part of
promoting all around wellness to children in terminal situations. If child life professionals from
states who offer the appropriate programs never move to the states that do not have the child life
degree curriculums, those states will go without the opportunity of having specially qualified
educators for the terminally ill children in their hospitals and hospice centers.

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With the profession only seeming to grow by one-hundred specialists a year, there is a
definite need to promote and endorse the field to the upcoming high school students, especially
high school seniors and juniors; the field is not growing that quickly simply because people do
not know about it unless they are in a medical situation or have a child in one. To better relay
the information related to this specialty to future students, this profession should be added to
books used by the high school allied health and family consumer science career books used to
educate the students on the variety of career choices available. Also, promoting the field during
orientations, tours and taking the initiative to have the program spread to other universities and
schools should all be options in increasing the size and number of these undergraduate programs.
As masters of communication, Child life specialist and the Child life council should
communicate this need and other concern to those who can help them change the statistics in
favor of the children who need the help of child life specialists.
Child life specialists specialize in communication and without communication both the
parent and the child would be lost. The child could easily misunderstand their diagnosis,
treatment and rights when it comes to their condition. A child could have many technical terms
thrown at them that only confuse them and further damage their psychological state, an area that
is critical for any time of treatment or recovery. As parents, the main job a mother or father has
is support and to do so they need a sound mind that they can only accomplish when they have the
education and understand that can only come from communication with a specialist. Without an
increase in these programs, many children will continue to move along the health care system

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without the assistance of someone who is knowledgeable and understanding enough to talk to
them in their own words, someone who can guide them through their treatment with the
appropriate level of personalization that children need in a medical setting to flourish.

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Annotated Bibliography
Aschenbrenner, A. P., & Winters, J. M. (2011). Integrative review: parent perspectives on the
care of their child at the end of life. Jounal of Pediatric Nurses, ECU Database.
Israelsen-Hartley, S. (2010, Janu 4). Byu nurses identify problems in caring for terminally ill
children. Deseret News. Directly related to my topic, this article shows that there are
issues in hospice care for children, and one major one is communication. Not only is
communication between staff and patient suffering but also between one language to
another. There is an apparent need for more bilingual professionals in this and all areas
of the medical field.
Koller, D. (2007). Preparing children and adolescents for medical procedures. Child Life
Council Evidence-Based Practice Statement, 1-13. This article states that children, no
matter what procedure they are being prepared for, should be allowed three major rights:
one, information in words they will understand two, a chance to express how they feel
and three, a developed trust in the medical team. For this paper, I will stress the need for
more child life specialist in America since all three of these components help to make up
the child life profession.
Krames StayWell, (2011). Care of the terminally ill child: The childserve organization breaks
down the a terminally ill child’s need for love, their concept of death and how to deal

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with anticipatory grief. Understanding the child’s view of their condition can help
professionals, like child life specialists, understand the steps then need to take in order to
provide that quality care.
Mack, J. W. (2009). Peace of mind and sense of purpose as core existential issues among
parents of children with cancer. Pediatrics & Adolescent Medicine, 163(6), doi: ECU
Database. This article expresses how having a terminally ill family member effects the
young and old whether it’s a child with a sick parent or a parent with a sick child. Parents
of children who have terminally ill children are affected through both psychological and
physical stress; this study includes one hundred and ninety-four parents of children with
cancer and found that parents had a better peace of mind when they had communicated
with and trusted the medical staff like Child life specialists and oncologists.
Spinetta, J. J. All (2009), Optimal care for the child with cancer: A summary statement from the
SIOP working committee on psychosocial issues in pediatric oncology. Pediatric Blood
& Cancer, 52: 904–907. doi: 10.1002/pbc.21863 ECU Database. This journal from the
SIOP concludes that children need to receive the most efficient care while also having an
intact emotional and psychological state during the process. In relations to my topic, I
will use this as a comparison, showing that without the appropriate care children will
have the reverse outcome when experiencing a medical procedure or battling cancer.
Whitty-Rogers, J. (2009). Working with children in end-of-life decision making. Nursing
Ethics, 16(6), doi: ECU Database. This journal talks about the changing ways medical

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centers communicate with their child patients; with these new methods, that show
diversity and allow children to become active figures in their medical care, may also
leave room for error, since children may not fully understand. With the help of Child life
specialist, this misunderstanding may never occur and these children will be able to make
decisions with more clarity and awareness.