VOLUME 30 • NUMBER 4
FALL 2012
Perspectives from the 2012 Worldwide
Outreach Scholarship Winners
As the practice of child life continues to grow internationally, CLC remains committed to
supporting its members abroad with scholarship awards to attend the annual conference.
The stories below share the “first-timer” conference attendee experiences of four of our colleagues working to support children and families around the globe.
Janet Burke
Manager, Play and Music Therapy, Sydney Children’s Hospital,
Sydney, Australia
My experience as a Child Life Conference International Scholarship Recipient was
definitely life changing. From workshops to keynotes, orientations to networking
events, poster presentations to plenary sessions and hospital tours – there was information to be
gained during every interaction and an incredible array of opportunities available.
To set the scene: in Australia, nationally we have around 70 positions focused on the psychosocial
care of children in hospital and hospice. At the current time, we do not have national uniformity of
title or qualifications for the profession. I am also new to the role of Manager, and the Chairperson
of our small Australian Association of Hospital Play Specialists (AAHPS), which is completely run
continued on page 7
INSIDE
2
3
4
10
Child Life Alphabet
Q is for Quick Rapport
President’s Perspective
From the Executive Director
Looking Back, Looking
Forward: 30th Anniversary
Academic Preparation
Task Force 2020
Advances Profession
In Focus:
T he impact of preparation
and support procedures for
children with sickle cell disease
undergoing MRI
Katherine L. Bennett, MEd, CCLS, Monroe Carell, Jr. Children’s Hospital at Vanderbilt, Nashville, TN
“Let’s think about the relationship.” This
is a statement I have heard many times from
mentors, managers and colleagues within the
child life field. This statement may initially cause
frustration as one’s inner thought process may
respond with: “I’m not really trying to figure out
the whole relationship here. I’m just trying to
figure out a response to this particular situation.”
The truth is this question about “the relationship,” in any given situation, is a wise one to
consider. Relationship building, specifically of
the supportive nature, with children and families
is the foundation for child life interventions
(Gaynard, Wolfer, Goldberger, Thompson,
Redburn & Laidley, 1998). Many times, this
foundational child life skill of relationship
building must be developed quickly and under
stressful circumstances. The ability to build quick
rapport with a child and a family is an important
relationship building skill for a child life specialist. Rapport building, as the beginning phase
of therapeutic relationship development within
child life practice, has been clearly documented
in the research literature and is a necessary and
valued skill for child life specialists.
According to Merriam-Webster’s Dictionary
(2012), “quick” is an adjective meaning “acting
with speed, fast in development or occurrence,
reacting to stimuli with speed and keen sensitivity.” Synonyms include alert, prompt and ready
(Merriam-Webster, 2012). Rapport is a noun
defined as “relation, especially relation marked
by harmony, conformity, accord or affinity.”
continued on page 8
BULLETIN
FALL 2012
PRESIDENT’S PERSPECTIVE
Introducing Myself
& the Year Ahead
I hope this quiz allowed you to learn one or
two new things about me!
I
magine it is
June 1988.
It was the year
when Paula Abdul
released Forever Your Girl, we were getting
excited about our athletes competing in the
Summer Olympics in Seoul, Korea, M&Ms
were the most popular candy, and celebrations continued for a Canadian hockey
team, the Edmonton Oilers, who won the
Stanley Cup over the Boston Bruins! That
same year, I got my first job in child life at
BC Children’s Hospital in Vancouver, British
Columbia…. never dreaming that 24 years
later, I would be writing a Bulletin column as
CLC President.
I look forward to the year ahead for many
reasons, but first and foremost is the opportunity to get to know the membership.
Through activities with the CLC Board of
Directors, committee work, networking at
conference, and reading posts on the CLC
Forum, I am getting to know each of you a
little bit better. In this column, I want to offer
you the opportunity to learn a bit more about
me. Here is a quick “Get to Know Me” quiz
to get us started:
1. I say “Zed” instead of “Zee” for the last
letter of the alphabet; I spell words a
little differently (like colour and centre),
I celebrate Thanksgiving in October,
and I call coins “loonies” or “toonies”
because….
2. True or False: I have worked on an adolescent unit, renal unit, and medical day
unit as a child life specialist; in a hospital
foundation; on more than one CLC committee; and have served more than once
on the CLC Board of Directors.
3. Travelling is one of my passions, and I
hope to get to all seven continents one
day. Which three continents have I not
travelled to?
4. I got my start with CLC by volunteering
on the _________ Committee, the group
that (among its many tasks) reviews
abstracts and selects presenters for a large
annual event.
5. True or False: One of my professional
passions is leadership development. I have
a philosophy that every child life specialist
is a leader, whether or not they have a
leadership title.
Child Life Council Bulletin/FOCUS
11821 Parklawn Drive, Suite 310, Rockville, MD 20852-2539
(800) CLC-4515 • (301) 881-7090 • Fax (301) 881-7092
www.childlife.org • Email: [email protected]
President
Diane Hart
Executive Editor
Jaime Bruce Holliman
Associate Editor
Jessika Boles
Executive Director
Dennis Reynolds
Managing Editor
Cecilia Sepp
Published quarterly in January, April, July, and October. Articles should be submitted by the 15th of January,
April, July, and October. Please see Submission Guidelines in the Bulletin Newsletter section of the CLC Website
for more information.
For information on advertising in the Bulletin, please refer to the Marketing Opportunities
section of the CLC Website: http://www.childlife.org/Marketing Opportunities/
Bulletin advertising is accepted in accordance to the CLC Relationship Policy and Advertising Guidelines, which
may be found at www.childlife.org. Acceptance of advertising does not indicate or imply endorsement by CLC.
Now, fast forward to 2012. How wonderful
that all these years later, I am still as excited
to come to work every day and as passionate
about the child life profession as I was when
my career began. Like many of you who
attended the 30th Anniversary CLC Conference in Washington, DC, I found myself
reflecting on our child life history -- where
we were, what we have accomplished, and
where we are going. I was in awe throughout
the conference at the breadth, depth, and
quality of presentations, and the work that
was presented by various committees and
task forces. For example, you know that an
Internship Supervisor’s Manual does not just
come together, nor does a Mentorship Pilot
Project get started without the dedication and
commitment of many different contributors.
I am very proud to be part of an association
whose members never fail to inspire.
In closing, you have already heard details
about the development of the CLC Strategic
Plan for 2012-2014. What I hope now is
that you will take some time over the coming
months to follow the progress the CLC
Board, Committees, Task Forces and CLC
staff are making on the strategies outlined
in the plan. We want to bring the strategic
plan to life for all of the members, so that
you know how the work being done directly
aligns with the strategic plan. Watch for
these updates through this column, as well as
through the President’s Blog.
I look forward to sharing our exciting
journey as an organization and as a profession
during the coming year!
1. I’m Canadian; 2. True; 3. South
America, Antarctica and Australia ; 4.
Conference Planning; 5.True
Diane Hart, MA, CCLS, EDAC
As my colleagues at BC Children’s Hospital
know, I have an open door policy. I would
like to extend that to all of you, by having an
open email or phone policy. I hope that I hear
from you throughout the year as we get to
know each other better. My complete contact
information is available through the Member
Directory in CLC Community.
Answers:
2
A Publication of the Child Life Council
BULLETIN
FALL 2012
From the Executive Director
The Call for Nominations for the CLC Board...
How Are Board
Candidates Chosen?
Dennis Reynolds, MA, CAE, CLC Executive Director
E
very year around
the first of
October, we
announce the Call for Nominations for CLC
Board positions. The CLC Board is recognized
as a body of distinguished child life specialists,
but the process for who they are, how they get
there, and what they do, is remote.
I would like to demystify this process a
bit: “who” serves on the Board, “how” they
get there, and “what” the Board does. This
is an especially germane discussion around
this time of year, when on the one hand we
are gearing up for the November CLC Board
meeting – one of two times a year this group
gets together face-to-face – while at the same
time having launched the process that will
bring in four to five new members of the
Board during the Spring.
“Who” is all about “How”
The determination of “who” serves on
the Board is really interwoven with the
process of how potential Board members
are identified and vetted. The most critical
step in this process is the identification of
nominees (whose names are put forward).
Any CLC member who is a CCLS can put
his or her own name forward, and any CLC
member can suggest the name of any other
CLC member for consideration for a Board
position. Not everyone whose name is put
forward can be named on the final slate of
candidates, but everyone will be given serious
and due attention. That’s what this call for
nominations is all about – garnering names
from the CLC community for consideration.
Who decides which names forwarded
will be selected for the final Board
slate of candidates?
The group that decides which of the
individuals whose names are put forward will
ultimately be included on the final slate of
candidates is the CLC Nominating Committee. It is not the Board of Directors who
A Publication of the Child Life Council
decides. The overlap with the Board is that
the immediate past president serves as the
Chair of the Nominating Committee, and
the president-elect serves as a member of the
Committee. There are six other members of
the Nominating Committee, each of whom
serves two-year terms, none of whom is a
current Board member, and the majority of
whom have never served on the CLC Board.
In selecting a slate of final candidates, the
Nominating Committee acts independently.
Of all the individuals nominated,
how are the final candidates for the
slate selected by the Nominating
Committee?
The Nominating Committee is very
thorough and deliberate in considering all
names put forward. All nominees are asked
to submit a resume, answer a questionnaire,
submit a letter of reference from a work
colleague, and submit a letter from their
supervisor acknowledging that the nominee
will be able to take the time to fulfill the
responsibilities of being on the CLC Board.
The Nominating Committee reviews these
documents, and then selects candidates for
phone interviews.
The Nominating Committee is very committed to considering all nominees equally.
But what does the Nominating Committee
actually look for in terms of credentials and
other background information in selecting
a nominee to be on the final slate of candidates? The most important is involvement
in the child life profession. As a practical
matter, usually this implies involvement
beyond the walls of one’s own hospital,
university, or other institution that a nominee
is affiliated with, but this does not always
mean involvement with CLC. Often that is
the case, but there have been instances where
candidates who have been selected have been
most involved in local, state, or regional child
life organizations. Involvement could be
serving on a committee or task force or being
involved in the planning of child life events
like the CLC Annual Conference or a local,
state, or regional conference.
Another aspect the Committee looks for
is diversity and representation. This includes
demographically, geographically, and by size
of program.
What’s with the “Single Finalist
Candidate for Each Board Position”
Approach?
The approach that CLC shifted to a few
years ago has not been without controversy.
This is the part of the process where the
Nominating Committee, after considering all
nominees, selects only one candidate for each
available position. This slate is then submitted
to the membership for approval. This runs
counter to the normal notion of an “election”
where we select from two or more candidates
for any position. There were a myriad of
reasons for adopting this approach, including
the challenges the Nominating Committee
often experienced in identifying at least two
candidates who were willing to run for each
position. And when contested elections
were held, the results often seemed to favor
continued on page 9
Child Life Council
Executive Board 2012-2013
President
Diane Hart, MA, CCLS, EDAC
President-Elect
Amy Bullock Morse, MSEd, CCLS
Immediate Past President
Toni Millar, MS, CCLS
Secretary
Suzanne Graca, MS, CCLS
Treasurer Trish Haneman Cox, MSEd,
MSW, CCLS
Directors Kimberly Allen, MS, CCLS
Carla Oliver, MSW, CCLS
Melissa “Missi” Hicks, MS,
CCLS, LPC, RPT-S
Kate Shamszad, MS, CCLS
CACLL Liaison Michele Wilband, MSEd, CCLS
CLCC Senior Chair Quinn Franklin, MS, CCLS
Executive Director Dennis Reynolds, MA, CAE
To contact a Board member,
please visit the CLC Member Directory at
http://www.childlife.org/Membership/
MemberDirectory.cfm.
3
BULLETIN
FALL 2012
Looking Back, Looking Forward
Reflecting on the history of the child life profession prompts us all to reflect on our own personal
and professional histories. Part of that history, inevitably, includes dealing with the death of
a patient and supporting families as they grieve. In this issue’s anniversary column, our guest
authors share their very personal and poignant experiences of bereavement work with children
and families. The insightful lessons learned and self-reflection described in these personal
accounts are sure to capture your attention and encourage you to think back on your own
practice surrounding end-of-life interventions.
AFirstforMe:ExplainingDeathtoaPreschooler
Amanda Honeyman, MS, CCLS,
Children’s Hospital Colorado, Aurora, CO
I
had just begun developing my role as a Resource Child Life Specialist, which meant
I would be providing services to uncovered
areas of the hospital, assisting child life staff
on busy units, as well as covering hospitalwide child life needs on Saturdays by myself.
Although I had almost five years of experience under my belt, I felt most confident
with preparations and procedural support in
the outpatient setting. One Friday afternoon,
I received a phone call from the Pediatric
Intensive Care Unit social worker…and I was
forced to face my fears with a very unfamiliar
child life intervention.
The social worker’s referral was to share a
death notification for a family, which was to
be completed on Saturday. This was the first
time I was faced with explaining death to
someone. The social worker began to hone
in on the details of a fiery car crash, two little
girls in the hospital and their mother who
had died at the scene. Racing through my
mind were the words “You have to tell this
child her mother died!”
Feeling unprepared and worried, I turned
to my peers for support. Coworkers instilled
confidence that my child life education and
training had prepared me for a situation like
this; I took a deep breath and began to help
this family in need. My focus was providing
support to a grieving family and explaining
4
I can remember the father’s
wide eyes—full of concern but
with great focus on my words—
while I explained the role of
child life, provided explanations
of common reactions of
preschoolers about death, gave
potential coping techniques,
and devised a plan to explain
to the four year old about the
death of her mother.
to a four year old that her mother had died.
I spent about an hour, Friday evening,
comforting multiple family members of the
two little girls. The two year old was fairly
sedated due to her head and neck injuries,
while the four year old suffered only minor
injuries and was being discharged from an
observation unit Friday night. The father
requested that the four year old have some
time to recover from her medical experiences
and that I return on Saturday to meet with
her. I can remember the father’s wide eyes—
full of concern but with great focus on my
words—while I explained the role of child
life, provided
explanations
of common
reactions of
preschoolers
about death, gave
potential coping
techniques, and
devised a plan to
explain to the four year old about the death
of her mother.
Reflecting on this initial conversation with
the family, I found that my nerves began to
calm while my confidence began to build.
However, the most difficult part was still
to come the next day. After deciding that
the four year old would be most attentive
Saturday morning, the father requested I
meet with her at the bedside of the two year
old and that there only be a few close family
members present to support as well as hear
the developmentally appropriate language I
would use to explain death.
Saturday morning arrived and my brain
felt full. I reviewed all the potential questions
and reactions that I thought a preschooler
could have. I packed my trusty child life tote
bag with toys, memory box craft items, feelings activities and one important children’s
book to help understand death.
I can still remember the details of the room
as I entered to meet with the four year old.
continued on next page
A Publication of the Child Life Council
BULLETIN
continued from previous page
The father and grandparents were sitting
next to the two year old lying in bed.
The four year old was snuggling with her
aunt on the sunny window seat looking
at get-well cards made by classmates from
school. The father introduced me to the
four year old and explained that I was
going to talk to her about her mother.
I sat down on the floor and smiled at
the blonde-haired, blue-eyed little girl.
I began to share with her why I had come
to see her this morning. As her aunt
held her tight in her lap, the four year
old shared quietly what she remembered
and what she had already been told about
the accident and her mother. The little
girl shared that her mother had been
badly hurt and was now in heaven. As
I provided reassurance, comfort and
explanations, I pulled out the children’s
book and began to read a few specific
pages. The four year old slowly crept
from her aunt’s lap to the space next to
me and rested her head on my arm while
I read to her. This is one of the sweetest moments I have experienced in my
career.
FALL 2012
First Patient Death
Kathleen McCue, MA, CCLS, LSW,
The Gathering Place, Cleveland, OH
Before I tell you my story, I want to make
a disclaimer. Almost all of you who have
been in child life for a year or two have
experienced a patient’s death. My story is
not more interesting, or more moving or
more dramatic than any of yours. Most
of you could write a similar article and the
rest of us would read it and think “Yes, I
remember how that felt! I remember how
hard that was!” I hope that by sharing my
lessons learned from this experience, you
will go back to that time, at least briefly, and
once again think about what you’ve learned
about yourself and our profession from your
own experience with the death of a child.
And I hope you will smile at the memory of
that particular child, thus honoring the life,
however short, that he or she lived.
Jackie was three and a half when I met her.
I was working at Children’s Hospital of Los
Angeles while in graduate school in clinical
psychology. My position involved working
with children with advanced cancer, who
were treated with
very high dose
chemotherapy and
then maintained
in a Laminar Flow
Protected Environment Unit for
months until their
immune systems
rebounded. This
was 40 years ago,
before child life even had a name. Fortunately, I had an amazing supervisor, Margie
Wagner, and wonderful colleagues, who
helped me more than they know to work
through the first time I experienced the death
of a child I cared about deeply.
Jackie had been diagnosed with stage IV
neuroblastoma. She was the only child of a
very young single mother, who was already
overwhelmed with the responsibility of
raising a preschool child. Jackie’s mother had
few resources, no job, sometimes no place
to live, and now the cancer diagnosis was a
final challenge to her ability as a parent. This
mom did the very best she could, but visiting
her child in the hospital was often beyond
continued on page 6
After asking questions about visiting
her mother in heaven, clarifying and
re-clarifying the difference between life
and death, the four year old quietly took
a big deep breath. Everyone in the room
was quiet and tearful. The grandmother
stated that the family was still processing
this information, but acknowledged how
helpful my services were to them all. The
little girl stood up, walked over to her
dad and curled up in his lap. I knew
that there was still a lot of healing to take
place, but that I had helped begin that
process for this family and specifically
helped this little girl to understand the
loss of her mother.
CLC 2012 Webinars
Wednesday, October 3, 2012
Implementing Evidenced-Based Practice
into Clinical Practice
Tuesday, October 16, 2012
History of Child Life - Free for Members!
Wednesday, November 7, 2012
Four Key Fundamentals in Medical Play
A Publication of the Child Life Council
5
BULLETIN
FALL 2012
First Patient Death
continued from page 5
her capabilities, emotionally and logistically. Therefore, I became the person Jackie
connected to while hospitalized. I knew
very little about therapeutic relationships
and professional boundaries, and the risks to
Jackie, her mother and myself with this level
of involvement. I threw myself into Jackie’s
life. I played with her, taught her normal
preschool activities, comforted her when
she was sick or sad, and spent an enormous
amount of time just being present with her.
She responded by thriving, laughing, and
growing, and I responded by loving her.
After Jackie had been in our unit for about
6 months, her disease began spreading with
a vengeance. The decision was made to
stop treatment, move her to a regular floor
and make her as comfortable as possible as
she approached death. I remember finding
it harder and harder to stay away from the
hospital. As Jackie’s mom continued to
remain absent, I visited Jackie frequently
during the day, and sat with her at night after
my work day was over. Margie, my supervisor, sometimes came to the room where I was
sitting and holding Jackie, and gently talked
to me about whose need I was meeting, and
what was happening to my own heart. I
know I felt like my heart was breaking, but I
also know it felt like abandonment to move
away from this little girl at this time.
I was present in the room when Jackie
died. It is a moment I will never forget. A
piece of me died that day, but a new part of
myself, a professional part, was also born that
day. I was lucky; my child life colleagues and
supervisor supported me through the loss,
and taught me about healing. When I was
ready, I was challenged to truly understand
what I had learned from Jackie’s life and
death. These are some of the lessons:
1. Make every possible effort to maintain
the relationship between child and parent.
I look back and realize I could have done
more to help Jackie’s mom stay involved
in Jackie’s life at the hospital.
2. Always ask yourself about your role as
a professional, and how to draw the
boundaries. In another setting, I could
have endangered my job or my reputation
by the intensity of my involvement with
this child.
3. Losing a child you care about is devastating, even with appropriate limits to your
relationship. Take care of yourself and do
your grief work.
I went to Jackie’s funeral. I cried a lot.
Especially when I heard Jackie’s mother thank
me for being there for her daughter at a time
when she just couldn’t be. Weeks later, I
sent Jackie’s mom a copy of a videotape of
Jackie having a tea party while she was in her
isolation room. I wanted to give this mother
something wonderful to keep, a part of her
daughter’s life that she had not been able to
enjoy. That act, of reconnecting mother and
daughter, helped me move forward with a
much greater understanding of the role of a
child life specialist, and the challenges inherent to that role.
Alli Floryshak is CLC’s New Manager of
Professional Resources & Services
CLC is happy to announce that it has hired Alli Floryshak,
MS, CCLS, as its new Manager of Professional Resources and
Services. Alli has a Bachelor’s of Science degree in Rehabilitation Services from Penn State University, as well as a Master’s
of Science degree in Applied Developmental Psychology from
the University of Pittsburgh. Alli has clinical experience in the
outpatient setting from her time spent at St. Jude Children’s
Research Hospital in Memphis, Tennessee, and most recently
worked with the Child Life team at Johns Hopkins Children’s
Center as the inpatient Adolescent Unit specialist.
Alli continues to volunteer with the Make-A-Wish Foundation and St. Jude Children’s Research Hospital of the Mid-Atlantic region in her spare
time, and she also enjoys running and trying new recipes whenever possible.
6
CLC Upcoming Events
OCTOBER
Hospitals and Communities Moving Forward with Patient- and Family-Centered
Care: An Intensive Training Seminar—
Partnerships for Quality and Safety
October 1-4, 2012
Ann Arbor Marriott Ypsilanti at Eagle Crest
Ann Arbor, MI
Contact: Julie Moretz, Director, Special Projects,
([email protected]) at the Institute, or call
301-652-0281.
10th Annual Child Life Directors
Networking Retreat and Conference
October 7-10, 2012
Camelback Inn Marriott Resort and Spa,
Scottsdale, AZ
Contact: Chris Brown, [email protected]
or 512-466-1174
Helping Children Cope with
a Parent’s Serious Illness
October 19-20, 2012
Beachwood, Ohio
Contact: Kristina Austin, [email protected] or 216-595-9581 or visit http://www.
touchedbycancer.org/helpchildrencope/
Great Lakes Association of Child Life
Professionals Annual Conference
October 27, 2012
Riley Hospital for Children at IU Health North
Contact: Nancy McCurdy, MS, CCLS, nmccurdy@
iuhealth.org, or 317-688-2903 or visit http://
www.glaclp.com/
NOVEMBER
17th Annual Midwest Child Life Conference
November 3rd and 4th, 2012
University of Missouri Campus- Memorial Union
Columbia, MO
Contact: Angela Ball, Child Life Coordinator at
573-219-4264 or childlifeconference@health.
missouri.edu.
You may also obtain information by visiting
www.midwestchildlife.com
Child Life 101
November 16, 2012
St. Jude Children’s Research Hospital
Contact: Doni Anderson at 901-595-3020 or by
Email: [email protected]
You may also obtain information by visiting
www.stjude.org/child-life
A Publication of the Child Life Council
VOLUME 30 • NUMBER 4
Over the thirty years of child life’s
existence as an organized profession,
child life programs have expanded
throughout, within and beyond the
hospital environment. From inpatient
wards to emergency rooms and even
home hospice, child life specialists
have developed and implemented
interventions uniquely tailored to the
needs of each patient population.
Over the past few years, radiology
has emerged as a potential area
where child life specialists have much
to offer as they provide procedural
preparation and support for children
undergoing imaging or procedures.
Long scan times, the necessity of
holding still, and high patient traffic
are prime examples of the reasons
why child life specialists, in theory,
could make a positive impact on the
coping of these patients, families,
and staff. This issue’s reprinted article
details one particular combined child
life intervention, preparation and
procedural support, and its impact
on children with sickle cell disease
who underwent magnetic resonance
imaging (MRI). Results showed that
children who received the preparation
and support intervention were more
likely to successfully complete the
MRI exam and yield a clear image for
medical staff to interpret. This article
gives empirical evidence for the child
life work that has been done thus far
in the radiology department, and calls
for additional child life support in this
important health care area.
FALL 2012
The impact of preparation and
support procedures for children with
sickle cell disease undergoing MRI
Katherine R. Cejda, Matthew P. Smeltzer, Eileen N. Hansbury, Mary Elizabeth McCarville,
Kathleen J. Helton, Jane S. Hankins
Abstract
Background Children with sickle
cell disease (SCD) often undergo MRI
studies to assess brain injury or to quantify
hepatic iron. MRI requires the child to lie
motionless for 30–60 min, thus sedation/
anesthesia might be used to facilitate
successful completion of exams, but this
poses additional risks for SCD patients.
To improve children’s ability to cope with
MRI examinations and avoid sedation,
our institution established preparation and
support procedures (PSP).
Objective To investigate the impact of
PSP in reducing the need for sedation
during MRI exams among children with
SCD.
Materials and Methods Data on
successful completion of MRI testing were
compared among 5- to 12-year-olds who
underwent brain MRI or liver R2*MRI
with or without receiving PSP.
Results Seventy-one children with SCD
(median age 9.85 years, range 5.57–12.99
years) underwent a brain MRI (n = 60) or
liver R2*MRI (n = 11). Children who received PSP were more likely to complete
an interpretable MRI exam than those who
did not (30 of 33; 91% vs. 27 of 38; 71%,
unadjusted OR 0 4.1 (P = 0.04) and OR =
8.5 (P < 0.01) when adjusting for age.
Conclusion PSP can help young
children with SCD complete clinically
interpretable, nonsedated MRI exams,
avoiding the risks of sedation/anesthesia.
Keywords Sickle cell anemia; Sedation;
MRI; MRA; Child life specialist; Preparation and support procedure; Children
Introduction
C
hildren with sickle cell disease (SCD) are at an increased risk of developing ischemic
brain injury, including overt strokes and silent infarcts [1, 2]. The frequency of
primary overt stroke in homozygous HbSS children is 5–10% [3], with cumulative
incidences of primary stroke of 11% by age 20 years [1, 4]. Chronic blood transfusion
therapy is considered the standard of care in children with SCD who are known to be at
high risk for stroke [5, 6]. Children with SCD often undergo imaging studies to detect
or monitor the neurological complications of their disease [7] as well as iron overload [8],
a common complication of repeated blood transfusions. MRI and magnetic resonance
angiography (MRA) are among the most frequently used diagnostic tests to evaluate the
brain for evidence of new disease or progression of existing disease [7, 9, 10] and R2*MRI
has been shown to accurately quantify iron deposition in the liver [11, 12].
To obtain accurate information and reduce motion artifact during MRI testing,
continued on Focus page 2
FOCUS
continued from Focus page 1
children are required to remain motionless
during the exam. Avoiding movement during
an MRI test can be particularly challenging
for young children, especially considering the
long duration of many MRI exams (30–60
min). Many hospitals use sedation/anesthesia
to ensure stillness and successful completion
of the MRI examination. In children with
SCD, however, there are increased risks
involved with the use of sedation/anesthesia. Sedation can increase vaso-occlusive
complications from SCD including pain and
acute chest syndrome [13–15]. To avoid these
complications, children receive aggressive
intravenous hydration before undergoing
sedation/anesthesia. In some cases, blood
transfusions are also required. These preventive measures can effectively reduce risk but
are burdensome to children and families and
increase the cost of the diagnostic procedure
About the Views
Expressed in
Focus
With the goal of reducing the risks and
high costs associated with sedation/anesthesia, a program was implemented at St.
Jude Children’s Research Hospital to deliver
preparation and support procedures (PSP) for
young patients (5–12 years old) with SCD
undergoing MRI testing of either the brain or
liver. The PSP program aims to educate and
prepare children with SCD and their families
about an upcoming MRI procedure, with the
goal of improving cooperation and coping
with MRI testing while reducing the need for
sedation/anesthesia and the subsequent risks
associated with it. In this retrospective study,
we reviewed whether use of the PSP program
affected the ability of young children to
successfully complete brain MRI or liver
R2*MRI exams without the use of sedation/
anesthesia.
Materials and methods
Study participants
Deborah Tellep, MEd, EdS, CCLS
Joan Turner, PhD, CCLS
PSP program
Proofreaders
Recognizing the need for a better means
to prepare children with SCD for diagnostic
imaging testing without using sedation/
anesthesia, the Child Life Program at St. Jude
offered PSP to children with SCD who were
scheduled to undergo MRI exams between
Focus Review Board 2012-2013
Brittany Blake, MS, CCLS
Siri Bream, MSCD, CCLS
Kathryn Davitt, MOT, OTR, CCLS
Nicola Elischer, MA
Caitlin Koch, MS, CCLS
Anne Mohl, PhD, CCLS
Allison Riggs, MS, CCLS
Cara Smith, MA, CCLS
Desiree Heide, CCLS
Janine Zabriskie, MEd, CCLS
significantly. Furthermore, avoiding sedation
in a young child can allow performance of
certain MRI exams that cannot be completed
under sedation, such as functional MRI
techniques.
This retrospective study was approved by
the Institutional Review Board at St. Jude.
Data were reviewed from the medical records
of all children with SCD (of any genotype)
at our institution between the ages of 5 and
12 years who underwent a conventional MRI
of the brain (with or without MRA) or an
R2*MRI of the liver (for iron quantitation)
between September 2008 and November
2009. R2*MRI of the liver was included in
this analysis because this exam is increasingly
used in children with SCD and iron overload
and requires patient cooperation with the
breath-holding technique. Demographic and
clinical data were collected. Children younger
than 5 or 13 years or older were excluded
because children who are ≤5 years of age
usually require sedation/anesthesia for MRI
procedures, and those ≥13 years of age are
able to cope reasonably well with MRI testing
without sedation/anesthesia or a support
procedure.
It is the expressed intention of Focus to
provide a venue for professional sharing
on clinical issues, programs, and interventions. The views presented in any article
are those of the author. All submissions
are reviewed for content, relevance, and
accuracy prior to publication.
2
FALL 2012
September 2008 and November 2009. The
objectives of the PSP program were to reduce
test-associated anxiety, recognize patientspecific obstacles to performing the diagnostic test, identify each child’s individual coping
strategies, and help children develop a sense
of control. The ultimate goal was to improve
coping and cooperation with MRI testing
in order to obtain an adequate and clinically interpretable MRI exam without using
sedation/anesthesia.
With this goal in mind, the unique
background of a child life specialist is ideal in
this setting. Child life specialists are trained
professionals with degrees in human growth,
child development and related areas. To
become certified, child life specialists must
complete a supervised clinical internship, pass
a certification examination administered by
the Child Life Council and follow guidelines
for continuing professional development
throughout their careers [16]. Because of this
specialized training, child life specialists are
able to focus on children’s developmental and
psychosocial needs within the hospital setting
and promote effective coping for children
facing challenging or stressful experiences.
Children were referred to the PSP program
by their treating clinicians, who made these
decisions during the children’s regularly
scheduled clinic visits. A referral was made
on the basis of caregiver’s availability to meet
with the child life specialist. Only stable
patients were referred to the PSP program
and acutely ill patients were referred for
sedation/anesthesia because of the urgent
need of their MRI exams. All children with
SCD participating in the PSP program were
evaluated by a certified child life specialist
within 30 days of MRI testing. During this
meeting, the MRI procedure was explained
to the child and his or her caregivers, and the
child’s prior experience (anxiety level, use of
sedation, etc.) with MRI testing was reviewed
(Table 1). The PSP program was provided
to children by only one child life specialist.
The child life specialist used a small model
MRI machine, pictures of the MRI suite
and recordings of MRI sounds to prepare
the child for the procedure. The sequence
of events for the MRI exam and sensory
information, including sight, sound and
touch, was provided using age-appropriate
explanations. Children and caregivers had
an opportunity to ask questions. Each child
was given a specific job, such as holding
still during a brain MRI, or holding his or
A Publication of the Child Life Council
FOCUS
FALL 2012
Results
Table 1. Preparation and support procedure steps
A total of 87 children with SCD underwent MRI testing (brain MRI or R2*MRI of
the liver) from September 2008 to November
2009. However, 16 (18.4%) children were
prescribed sedation prior to being considered
for PSP and were therefore excluded from
the main outcome analysis. The decision to
prescribe sedation/anesthesia in these 16 cases
was entirely at the discretion of the treating
clinician and the reasons for this choice were
not always available, but in most cases there
was an emergent need for the MRI testing.
The median age of the remaining 71 children
was 9.9 years (range 5.6–12.9 years). Of these
children, 65 (91.5%) had HbSS, 5 (7.0%)
had HbSβ0 thalassemia, and 1 (1.4%) had
HbSC genotypes. Sixty (84.5%) children
underwent brain MRI and 11 (15.5%)
underwent a liver R2*MRI.
Prior to MRI testing
Preparation
• Child life specialist meets with family and child
• Teaching materials shown (model MRI machine, pictures of MRI suite and MRI sounds)
• Sequence of events explained
• Sensory information explained
Rehearsal
• Child empowered with a job to do during MRI exam
• Child rehearses the job
• Coping plan developed in conjunction with child and parent
During MRI testing
Support
• Presence of parent or child life specialist in MRI suite
• Touching of child’s hands or feet for reassurance
• Squeeze ball in hand if needed
• Updating child on MRI progress
• Visual or audio distraction
her breath for 10-s intervals during a liver
R2*MRI. Next, the child life specialist led
the child in rehearsing his or her job, while
giving the child time to ask questions and
develop a coping plan for the procedure. At
the end of this session, an individualized plan
was developed to address the specific aspects
of the MRI testing. The coping plans were
tailored to the individual needs of each child
and family and included options such as the
presence of one caregiver and/or the child
life specialist in the room during the MRI
exam; holding onto a squeeze ball in case the
child felt the urge to move; touching of the
child’s hand or feet by the parent or the child
life specialist during the procedure to remind
the child of the presence of a support person
in the exam room; updating the child on
the progress of the MRI testing (how much
time was left, etc.); and watching a movie (an
option only during a brain MRI), listening to
music or listening to a book on tape.
The costs associated with implementing
the PSP program were relatively low. The
tabletop model MRI machine was purchased
for less than US $600 and included an audio
recording of MRI sounds and a doll to fit
the model MRI machine. Other supplies
included a digital camera and printer paper
to create the photo books, as well as squeeze
balls, which cost less than $200 altogether.
Audio distraction files were downloaded from
free websites or purchased audio books. The
most significant cost to implementing the
PSP program was the MRI-compatible movie
system (ranging from $4,000 to $7,000),
A Publication of the Child Life Council
which includes a projector with special lens,
a screen, cables and mirrors that attach to the
MRI head coil.
Statistical analyses
An MRI test was defined as successful
when it yielded interpretable results (by a
neuroradiologist or pediatric radiologist) and
did not require the use of sedation/anesthesia.
Median ages were compared between patient
groups by the Mann-Whitney-Wilcoxon test.
Associations between gender and prior MRI
exposure were compared using the chi-square
test. Logistic regression models were used to
evaluate the association between PSP and
completion of an interpretable MRI exam,
with and without controlling for age. Modelbased odds ratio estimates are presented with
95% confidence intervals. P-values less than
0.05 were considered statistically significant.
All data were analyzed using SAS version 9.2
(Cary, NC).
The child life specialist offered PSP to 33
(46.5%) children; among the specific options
for activities, 7 chose to listen to music, 25
chose to watch a movie, and 1 chose to listen
to an audio book. There were no differences
in gender among children who received PSP
and those who did not; however, PSP participants were younger than nonparticipants
(median ages 8.9 vs. 10.9 years, P=0.0002).
There were no significant differences in prior
exposure to MRI among PSP and non-PSP
participants (Table 2). The age among PSP
participants who failed an MRI exam ranged
from 5.4 to 7.3 years. The success rates in
coping and completing an interpretable
MRI test did not differ significantly between
children undergoing liver R2*MRI and those
undergoing brain MRI exams (P=0.11).
Children who underwent PSP had 4.1
(95% CI 1.0, 16.2) times the odds of
continued on Focus page 4
Table 2. Characteristics of children undergoing
unsedated MRIs according to exposure to
Preparation and Support Procedure (PSP) intervention
Successful MRI exam Unsuccessful MRI exam
With PSP Without PSP With PSP Without PSP
Median age (years) (range) 8.9 (5.6-12.9) 10.8 (6.3-12.9) 5.6 (5.4-7.3) 10.9 (6.8-12.9)
No. of successful MRI scans (%) 30 (91%) 27 (71%)* 3 (9%) 11 (29%)
Median number of prior MRIs (range) 1 (0–4) 2 (0–14) 0
1 (0–4)
Median number of prior failed MRIs (range) 0 (0–1) 0 (0–2) 0
0 (0–1)
Median number of prior sedated MRIs (range) 1 (0–3) 2 (0–10) 0
1 (0–3)
*Unadjusted P-value=0.0458 for the comparison between successful completion of MRIs with and without PSP,
and adjusted P-value for same comparison controlling for age P=0.0098
3
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continued from Focus page 3
completing an interpretable MRI exam compared to children who did not receive PSP
(P=0.0458) (Table 2). Because age differed
significantly between those who did and did
not receive PSP, we evaluated the association
between PSP and completing an interpretable
MRI exam using a multiple logistic regression model that controlled for age. After
adjusting for age, children receiving PSP
had 8.5 (95% CI 1.7, 43.3) times the odds
of successfully completing an interpretable
MRI exam compared to those who did not
receive PSP (P=0.0098). Of the 30 children
who successfully underwent MRIs with the
PSP intervention, 20 (67%) had required
sedation/anesthesia for a previous MRI.
Discussion
Procedural sedation can expose children
with SCD to dehydration, hypoperfusion,
hypothermia, acidosis, hypotension and hypoxia, all of which could trigger a sickle-cellrelated adverse event [17–20]. Avoidance of
sedation while obtaining adequate diagnostic
imaging results is a desirable outcome for
young children with SCD. Our results show
that the use of preparatory procedures along
with supportive measures allowed young children with SCD to undergo MRI testing of
the brain and liver, yielding clinically useful
results while eliminating the risks associated
with the use of sedation. Furthermore, some
of these children had undergone prior MRIs
with sedation/anesthesia, and with the use
of PSP, subsequent MRIs were completed
without the use of any type of sedation.
Several alternative techniques to sedation
have been employed in infants and young
children undergoing painful procedures or
imaging studies, such as the use of pacifiers,
sucrose, sleep deprivation, guided imagery,
play therapy and practice/rehearsal of the
imaging study [21–26]. Although practice
and support methods during diagnostic
imaging studies have been used in different
pediatric populations, they have been costly
or have been limited by the age group studied
and therefore lacked broad application. Most
importantly, none of them addressed the
SCD population specifically. Hallowell et al.
[27] used a full-scale mock MRI machine
devoid of magnets to prepare children for the
upcoming imaging study; although effective
in preparing children for the procedure, the
method is too expensive and not a feasible
4
FALL 2012
option for most institutions. Khan et al. [28]
used equipment such as video goggles during
an MRI and moving images projected onto
CT scanners to support children during
imaging studies. Although these tools, along
with preparation by a child life specialist,
were effective in decreasing the need for
sedation, the technology might not fit within
the budget of many hospitals [28]. Pressdee
et al. [29] used play therapy methods to
prepare children for MR imaging but focused
on children 4–8 years old and did not have
a control group for comparison. Smart [30]
used music and guided imagery audiotape
during MRI to provide relaxation to children;
while successful in decreasing the need for
sedation for the control group, this study
also included only children ages 4–8 years,
limiting its generalizability. In addition to
these limitations, none of these studies was
specific to children with SCD—a population
that could especially benefit from a procedure
that would avoid the need for sedation.
Although use of the PSP method appeared advantageous for our patients, our
work has some important limitations. Our
retrospective study investigated the utility
of a PSP method in young children with
SCD who underwent a clinical brain or liver
MRI study without the use of sedation/
anesthesia. Because a prospective randomized
design was not used to evaluate the efficacy
of the PSP intervention in reducing the use
of sedation/anesthesia, selection bias could
have been introduced when referring children
for the PSP program. However, gender and
prior MRI exposure among children who
completed MRI testing successfully were not
significantly different compared to those who
did not successfully complete an interpretable
MRI exam (regardless of PSP participation).
In addition, PSP participants did not have
a greater number of previous MRI experiences in comparison with non-PSP children.
This suggests that gender and previous
MRI experiences were not introducing bias
into the selection of participants to the
PSP program. The exclusion of children
who received upfront sedation/anesthesia
without being considered for PSP might also
have introduced a selection bias, because
these children, owing to their young age or
immaturity, may have not had a successful
MRI exam without the use of sedation/
anesthesia even if receiving PSP. However,
because PSP was not even attempted in these
16 children, it is not possible to confirm this
hypothesis. Children who participated in this
analysis underwent either a brain MRI or
liver R2*MRI, lasting approximately 30–60
min, and therefore our findings might not
be generalizable to other types of MRI or
longer-lasting imaging studies. Our results
apply only to children with SCD of similar
ages to those of our cohort; therefore these
findings should not be generalized to other
populations or illnesses. Finally, our study did
not prospectively measure process variables
of stress reduction and anxiety level, both of
which should be included in future prospective study investigating PSP intervention.
Conclusion
Our work to use PSP to allow nonsedated
MRI testing in children with SCD is unique.
The use of PSP was of significant benefit
to children as young as 5 years of age in
completing an interpretable MRI exam of the
liver or the brain without sedation/anesthesia.
The PSP program helped improve coping
with MRI diagnostic procedures within the
hospital environment while minimizing the
risks from sedation known to be associated
with children with SCD. The low cost of
implementation and ease of use are other
important advantages when compared with
the other published methods. Prospective
randomized studies are warranted to confirm
that PSP can successfully facilitate the
completion of optimal MRI examinations
while avoiding risks associated with sedation/
anesthesia in children with SCD.
Authors
K. R. Cejda, Child Life Program, St. Jude Children’s
Research Hospital, 262 Danny Thomas Place, Mail
Stop 121, Memphis, TN 38105, USA
e-mail: [email protected]
M. P. Smeltzer, Department of Biostatistics, St. Jude
Children’s Research Hospital, Memphis, TN, USA
E. N. Hansbury, Baylor International Hematology Center
of Excellence and the Texas Children’s Center for
Global Health, Houston, TX, USA
J. S. Hankins, Department of Hematology, St. Jude
Children’s Research Hospital, Memphis, TN, USA
e-mail: [email protected]
M. E. McCarville : K. J. Helton, Department of Radiological Sciences, St. Jude Children’s Research Hospital,
Memphis, TN, USA
A Publication of the Child Life Council
FOCUS
Acknowledgments
The authors thank Shawna Grissom, MS,
CCLS, CEIM, for supporting the implementation of the PSP program; Banu Aygun,
MD, Amy Kimble, FNP, and Nicole Mortier,
PA-C, MHS, for excellence in patient care
and support with patient referral to PSP;
and Winfred Wang, MD, and Vani Shanker,
PhD, for editing the manuscript.
Disclaimer
The study was supported in part by the
American Lebanese Syrian Associated Charities (ALSAC). The authors have no conflicts
of interest to declare.
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5
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FALL 2012
Child Life Focus: Guidelines for Submission
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Requirements
Aim and Scope: Child Life Focus
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encourages submissions that promote the
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Before you begin working on your article,
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·· Cover Sheet (should include title, word
count, author(s) information: name,
credentials, title, institutional affiliation,
address, daytime phone, email)
·· Manuscript (Blinded)
·· Separate Graphic/Artwork Files
(if applicable)
·· Signed Submission and Copyright Agreement Letter (available for download at
http://www.childlife.org/files/BulletinSubmissionLetter.pdf ).
The signed and dated submission letter can
be sent via email to [email protected] or
by fax to 301-881-7092.
What Happens Next?
After you submit your Focus article, the
Managing Editor will review the manuscript
to ensure that all of the basic submission
and style requirements have been met. Once
this has been verified, the Managing Editor
will send a letter of acknowledgement and
pass all files along to the Executive Editor for
further review. After a review period of approximately 1-2 weeks, the Executive Editor
will decide whether to pass the article along
to the Focus Review Board for a blind review.
At this point, you will be contacted with
further details about the process. The Focus
Review Board will review your article over
a period of several weeks, and will provide
the Executive Editor with their feedback and
recommendations.
Soon afterward, the evaluations will be
summarized and forwarded to you with a
decision on the status of the manuscript.
Manuscripts are assigned one of four possible
recommendations:
1. Accepted as-is with only minor changes
2. Recommended for acceptance with minor
revisions
3. Recommended revision/rewrite and
resubmit with suggested revisions for
review
4. Submission declined
Authors of those manuscripts which are assigned minor changes or minor revisions will
A Publication of the Child Life Council
FALL 2012
have approximately one week to make the
changes and submit the revised manuscript
for publication. Authors of manuscripts that
receive a recommendation to revise/rewrite
and resubmit will be invited to review the
suggested changes and submit an updated article at a later date. All authors of a published
Focus article will receive a thank you letter,
along with complimentary copies of the final
printed issue.
· Explore the literature/research on the
topic to find work that agrees or disagrees with your issue. It can also provide you with information beyond your
academic and clinical experience. Has
anyone already addressed your issue? Is
your issue still worth revisiting, or is it
unique? If it has been addressed before,
do you think it is common knowledge
among child life professionals?
Tips on Writing for
Child Life Focus
· As you search, themes and subthemes
will be identified, which will provide the
context for your issue, and will help you
refine the focus of your article.
A format that may help you organize
your thoughts and materials is the standard
outline for writing a research paper or writing
a report about research results. If the article
is not about research or a clinical intervention, authors can use only the Introduction,
Literature and Research Review, and Discussion sections as described below. For more
guidance on how to write a research paper,
see Purdue University’s Online Writing Lab
(OWL) at the following link:
http://owl.english.purdue.edu/workshops/
hypertext/ResearchW/index.html
1. Introduction
· Statement of problem or issue
· Purpose of the article, research study
or clinical intervention
· The discussion, research or assessment
questions
· Gaps in the literature as an argument
for the pursuit for the research topic
· Significance of the study/intervention
to the body of knowledge in the area
2. Literature and Research Review
You should always start your clinical or
evidence-based article by conducting a literature/research review. You need to be aware
of underlying foundations for the concepts
you are discussing, and have a working
knowledge of the most recent information
available on your subject. Take careful notes
on all relevant resources, and write down the
reference information to include in the list at
the end of your article. You may need to cite
the references in your text.
Process:
· First, define your issue more clearly and
place it in the wider context of the body
of work on the issue
· While books are important, journals
are generally more current in their
treatment of the issues. Unless you are
providing the history or theoretical
basis of your issue, you shouldn’t review
literature that is older than 8-10 years.
If searching online, adding the word
“journal” to your topic will bring you
more scholarly search results.
· Write a review or summary of the
relevant literature and research, with
subheadings as needed
3. Methods and Procedures
· Ensure empirical soundness by making
sure that the methods used for testing
your hypothesis will truly test your
research question
· Describe the research methodology or the procedures of the clinical
intervention
· Someone reading this section should be
able to replicate your procedures in their
setting
· Include any data analysis that was used
4. Results
· Describe the way the data was analyzed
· State any results, outcomes and effects
from data collection and/or the clinical
intervention
5. Discussion
· Restate the general purpose of the
article, research, or intervention. Then
discuss the findings as they relate to the
body of knowledge relevant to this issue.
End with recommendations for future
research or implications for practice.
Updated October 19, 2011
7
FOCUS
FALL 2012
From the Executive Editor
How Do We
Prioritize Research?
Jaime Bruce Holliman, MA, CCLS
I
n our course work
and internship
training, many of
us participated in
exercises geared towards helping us to prioritize our patient load and identify the order in
which we should tackle clinical needs. Some
curriculum programs may have even gone a
step further and incorporated administrative
duties, documentation requirements and
materials management into prioritizing an
already full clinical day. These prioritization
exercises provided us with an essential daily
child life skill that has become even more
challenging as our workloads increase and
our services become more ingrained into the
culture of the health care system.
So, given our current workloads and the
demands on our time, how do we prioritize
research?
Most, if not all, of us recognize research
and evidence-based practice as the cornerstones of nearly every aspect of our work.
And we as the child life community agree
that more research validating the impact of
our interventions and outlining best practices
Quality improvement
methodologies are being
utilized to set goals, make
changes and measure the
impact of that change in
all areas of health care.
is needed to support our growing profession.
The article selected for this issue of Focus,
The impact of preparation and support procedures for children with sickle cell disease
undergoing MRI, is an example of formal
research in clinical child life practice. Formal
research that is based on strict randomization
of participants, control and intervention
groups, and complex statistical analysis is
often something that we as clinicians shy
away from. When asked, many of us will
indicate lack of time as a major deterrent
from engaging in research activities.
Coming to your email box in September…
CLC’s 2012 Salary Survey!
CLC has contracted with Association Research, Inc., to conduct a salary survey for child life
specialists. To make this study statistically accurate, we need as many child life professionals
to participate as possible. By completing this survey, you will be participating in the advancement of your profession while ensuring that you, as an individual, will have the
most accurate statistics with which to measure your professional growth.
The survey responses will remain confidential. We ask that you read the brief directions and
then carefully answer each question.
Please complete the survey by October 17, 2012.
A summary of the results of the salary survey will be available to Child Life Council members
later this year. If you have questions or comments regarding the process, please feel free to e-mail
Association Research, Inc. at [email protected].
8
Again, I ask, how do we prioritize research?
While randomized control trials have
long been the golden standard in the world
of research, another less formal method of
identifying best practices and improving
patient care is being touted as effective and
valuable in various health care publications.
Quality improvement methodologies are
being utilized to set goals, make changes
and measure the impact of that change in all
areas of health care. One such method, The
Quality Improvement Model (www.ihi.org),
is widely used in clinical quality improvement and focuses on answering the following
three questions:
What are we trying to accomplish?
How will we know that a change is an
improvement?
What changes can we make that will
result in improvement?
These three questions seem far less
intimidating and far more accessible than the
complex language of formal research activities; in fact, they may actually seem familiar
and comfortable since we often ask ourselves
and our colleagues variations of these questions as we go about our every day work. This
method also allows us to be less rigid in our
quality improvement activities than we would
typically need to be in more formalized
research activities. It allows for evaluating the
success of an intervention and changing it
based on the new information learned.
So, how do we prioritize research?
One answer to this question may be to
identify a methodology that meets your
research needs and utilizes the resources that
you have available. I encourage you to take
a first step toward prioritizing research into
your practice by first learning about the many
options for research implementation. In the
meantime, enjoy learning about the method
that was effective for the authors of this issue’s
Focus article.
Visit the Child Life Marketplace
The Child Life Marketplace provides convenient
access to contact information from a growing
number of organizations that work with the
child life community.
Be sure to visit regularly to check out what’s new
at http://marketplace.childlife.org/
A Publication of the Child Life Council
BULLETIN
FALL 2012
Worldwide Outreach Scholars 2012
continued from page 1
by volunteers. So I knew that I had so much
to learn at a variety of levels and I was ready.
I commenced my conference experience
with preliminary workshops, and immediately felt a surge of motivation and inspiration. That evening, I attended Orientation
and the Connect 4 Success forums. It was
great to have so many different opportunities
and structures for learning and information
exchange, and it was fabulous for me to start
to make personal connections with people –
all of whom were so eager to share.
However, it was only when I went to the
Opening General Session that I began to get
a sense of the magnitude of what was ahead
of me. I had come from conferences in New
Zealand and Australia where we generally
would have 50-60 delegates, and suddenly I
was confronted with more than a thousand
faces united in their passion for this incredible
profession. The energy generated in those
general sessions was a phenomenon of its own.
And throughout the professional development workshops, intensives, and hospital
tours, I continued with each moment to
be inspired, encouraged, and motivated to
implement change, take on challenges, and
to grow. The availability, approachability
and generosity of the Child Life Council staff
and Executive Director also added a crucial
dimension to the conference.
So what did I learn? It would be impossible to summarize it in 5,000 words, let
alone 500. However, here are some key
insights I learned:
·· The model of work, struggles and successes is universal– which was incredibly
encouraging for continuing the journey
here in Australia;
·· There exists an incredible network of
people eager to generously share their
successes, failures, wisdom and history
with the sole motivation of advancing our
profession worldwide; and
·· Globally as a profession we have to reclaim
PLAY in our roles and be aware that it is
our strength and our core identity.
My immense thanks to the Child Life
Council staff and Executive Director who
could not have been more helpful; the
A Publication of the Child Life Council
I had come from conferences
in New Zealand and Australia
where we generally would
have 50-60 delegates, and
suddenly I was confronted
with more than a thousand
faces united in their passion
for this incredible profession.
Conference Planning Committee for a superb
event; my mentor Jerriann Wilson and friend
Chris Brown, and all those I encountered
for ensuring that my experience was not
only educational but enjoyable, warm, and
memorable.
Annemarie Oberholzer,
DCur, RN, Organisation for Paediatric
Support in South Africa , Lyttelton,
South Africa
If anyone asked me before the conference
to describe the work we’re doing in South
Africa, words like “trial-and-error,” “feeling
isolated,” and “up-hill battle” would most
probably have been included in the discussion. Being able to attend the Child Life
Council 2012 conference in Washington,
DC, was therefore an opportunity of a
lifetime. We were in transit for more than 22
hours and ended up with jetlag in a totally
different time zone, but when my colleague
and I arrived at the conference, it felt as
if we arrived home. Being surrounded by
more than a thousand people who finally
“spoke our language” was an overwhelming
experience! We’ve learned so much from the
intensives and workshops that were packed
with practical, valuable and evidence-based
information. To be able to view the exhibitions in the exhibit hall and to see and touch
products that we’ve only been able to read
about on the forum was awesome. But most
of all, to experience such generosity – people
being generous with their time, their knowledge, their experience, their help and their
products – was beyond words to describe.
Not wanting to miss out on anything,
we were booked for sessions first thing in
the morning till late in the afternoon. We
survived on energy bars and adrenaline,
running from one session to the next and
trying to meet with people in between. In the
evenings in our room, we discussed the different sessions we attended during the day and
tried to find ways in which we could apply it
to our situation in South Africa.
The child life specialty is still very much
unheard of in South Africa. With only two
programs rendering psychosocial support
to children according to child life principles
– one program at a private hospital and
one (barely surviving) program at a public
hospital – we have a huge job ahead of us to
create awareness among the general public,
health care professionals, and people in
decision-making positions. For this reason,
we’ve recently started the Organisation for
Paediatric Support in South Africa (OPSSA).
The International Sponsorship enabled me to
attend the 2012 CLC Annual Conference in
Washington, DC, and this fact alone resulted
in people starting to take note of what our
organization is doing. I mean, if what we are
doing is worthy enough to attract the attention of an organization in the USA such as
the Child Life Council — maybe others will
take us seriously and start listening!
We came back from the USA with a much
clearer vision of where we are going and what
we’re supposed to do, with numerous friends
who speak our language, and with renewed
energy to tackle the battle that, all of a sudden, does not seem so up-hill anymore!
We are planning a conference for April
2013 on the psychosocial support of children
in health care, and are currently in negotiations with senior role players in healthcare
who are very keen to partner with us. We
will keep the Child Life Council and forum
members up to date and will soon send out
a call for abstracts on the forum. I hope we
will be able to welcome a number of child life
specialists to South Africa next year.
Daria Sass,
CCLS and Psychologist, Hospice
“Emanuel” Foundation, Oradea, Romania
The vision of developing child life services
in Romania was born after years of suffering,
continued on page 11
7
BULLETIN
Q Is for Quick Rapport
continued from page 1
Synonyms include communion and
fellowship (Merriam-Webster, 2012). So,
quick rapport, then, could be considered as a
harmonious relationship that develops with
speed.
According to the Official Documents of the
Child Life Council (Child Life Council, 1990):
We are committed to relationships
built on trust, respect and professional
competence which contribute to the
development and problem-solving skills
that enable individuals and families
to deal effectively with challenges to
development, health and well-being.
These therapeutic relationships are a
specifically stated value of child life practice.
Kathleen McCue, in The Handbook of Child
Life (2009), defines a therapeutic relationship
as “a state of mutual interest or involvement
that has to do with healing or curing.”
Beyond these recommendations provided by child life leaders and resources, the
American Academy of Pediatrics (2000) also
describes the three main “jobs” of a child
life specialist as providing play experiences,
presenting developmentally appropriate
information about events and procedures,
and establishing therapeutic relationships
with children and parents to support family
involvement in each child’s care. Gaynard et
al. (1998) went on to note that these therapeutic relationships are essential in providing
familiarization with the hospital environment, aiding in the development of trust,
and allowing for information sharing with
the health care team, including the caregivers,
about the unique qualities of the child and
family to aid in individualization of care.
While there are many different settings
(ED, inpatient unit, outpatient clinic, etc.) in
which child life specialists work, the concept
of initiating a therapeutic and supportive
relationship with a child and a family remains
the same. The blatant fact that such a
relationship must be initiated in a thoughtful,
intentional manner is the same. Supportive
relationships, regardless of the environment, provide an increased opportunity for
children and families to share their feelings,
thoughts, and questions about the health
care setting. In addition, effective therapeutic
8
FALL 2012
relationships may also be a vehicle for staff to
monitor needs and offer support to decrease
stress, promote information processing, and
increase effective coping with stress (Gaynard
et al., 1998).
is not assumed by the professional and done
intentionally, the quality of services may
suffer. Furthermore, this is an area in which
professional boundaries with patients and
families may be challenged.
All of these benefits are relevant to many
settings employing child life specialists. Child
life professionals are expected to provide
opportunities for self-expression and a safe
environment for children and families to ask
questions. We are expected to continually
assess a child and family to gather clues that
indicate how to provide the best care at a
given time; we are also expected to decrease
stress and increase effective coping strategies.
Thus, relationship building is essential in
meeting these expectations. Child life specialists should seek to understand and excel in
their abilities to build relationships.
In addition, trust is one of the main
purposes of the relationship and is essential
for the relationship to continue and be effective. Building trust, within the framework
of the relationships established by child
life specialists, can take many forms. Child
life specialists must be prepared and keenly
sensitive to the needs of children in the
health care setting. Similar to the definitions
and synonyms of the word “quick,” when
initiating a relationship, child life specialists
should begin with the end in mind. Relationship building, even when done in a fast-paced
environment, is to be purposeful and have an
intentional process.
When child life specialists
respond quickly at this
vulnerable time, they
should be ready to provide
information, insight and
interactions designed to meet
the unique developmental
and psychosocial needs of
children and families.
Several studies on therapeutic relationships
among different professions are described
in Chapter 4 of The Handbook of Child Life
authored by Kathleen McCue (2009). Stuart
and Sundeen (1995), Thorne and Robinson
(1989) and Knafl, Breitmayer, Gallo and
Zoeller (1992) all reference different phases
of therapeutic relationships. These phases
include: initiation, fulfillment of the goals
of the relationship, and the conclusion of
the relationship. Knafl and colleagues(1992)
further note that while professional expertise
can be important, the supportive behaviors of
the professional were what really “stood out”
to the families.
McCue (2009) also lists some aspects of
building and maintaining the relationships
formed by child life specialists. The responsibility falls to the child life specialist to begin
and end the relationship. If this responsibility
Child life specialists should give attention to initiating a supportive relationship
as soon as a patient is admitted to the
hospital or enters the outpatient setting
when possible. In the experimental child life
program described in Gaynard et al. (1998),
initiating a supportive relationship early on
decreases uncertainty, increases perceived
sense of control, and allows assessment to
begin almost immediately. Children and
their families are under stress before they
even enter the health care setting. Coming
into the hospital or clinic environment can
increase anxiety and uncertainty because of
the strange, often intimidating environment.
When child life specialists respond quickly at
this vulnerable time, they should be ready to
provide information, insight, and interactions
designed to meet the unique developmental
and psychosocial needs of children and
families.
Depending on the environment, whether
it is the emergency department, the pulmonary clinic, the intensive care unit or the
pre-operative area, the child life specialist
should give attention to the cues of the child
and family and the practical demands of the
environment. The tone and pace of a first
meeting may look and sound different in the
emergency setting when stitches are needed
than in the pulmonary clinic for an initial
visit. Yet, while the tone and pace may vary,
some of the tools and techniques used to
build quick rapport within child life practice
are much the same. As demonstrated in the
continued on next page
A Publication of the Child Life Council
BULLETIN
continued from previous page
experimental child life program (Gaynard et
al., 1998), providing information via a brief,
double-sided brochure describing child life
services and the use of assessment items, such
as blank cloth dolls and markers, can serve
to enhance the depth of the initial meeting
and the relationship. Offering and facilitating
other self-expression activities are a valuable
skill of the child life specialist on the health
care team. Plain paper, body outlines, paint,
Playdoh®, dolls, cars, dinosaurs, journals and
familiar music are just a few of the things
child life specialists are able to use to aid in
building relationships in a medical setting.
Child life specialists use age-appropriate,
minimally threatening communication with
children, and play, as a vehicle to enhance the
quality and depth of relationships. Skill at
building rapport quickly and in stressful situations typically initiates these relationships.
This is an essential part of the work of a child
life specialist.
References
American Academy of Pediatrics. (2000). Committee
on Hospital Care: Child Life Services. Pediatrics, 106,
1156-1159.
FALL 2012
Board Candidates
offer a conference or not, regional groups
offer opportunities for involvement.
continued from page 3
As for involvement in CLC, there are several
avenues. Serving on a committee or a task
force is a great start. Submitting an abstract
for consideration at CLC’s annual conference
or writing an article for the Bulletin are other
approaches. These are all ways of attaining
that “extracurricular” experience. Starting with
that one involvement opens doors to the next
involvement, and that to the next.
candidates from larger programs and specific
geographic areas, suggesting a lack of inclusiveness that the single candidate approach
is designed to remedy. For this reason, the
Nominating Committee is always concerned
with getting a broad range of names submitted through the nominations process, and it is
extremely conscientious about thoroughly and
fairly vetting each nominee.
I Have Not Been Very Involved . . .
How Do I Get More Involved and
Into the Pipeline for Consideration
for the Board?
Whether aspiring to be on the CLC Board
or to be involved in some other way in
advancing the profession of child life, there
are many good starting points. Involvement
does not occur just at the national level. I
have the honor of being able to speak and
listen at two regional conferences this fall,
and I have been thoroughly impressed by
the level of organization, commitment, and
enthusiasm of those I have been working with
in making these arrangements. Whether they
This is where CLC board members come
from – this is the journey they have taken. If
you feel you are ready to take the next step in
your own professional journey, or you know
a colleague you believe would make a great
addition to the CLC Board of Directors, I
strongly encourage you to respond to the Call
for Nominations, which was issued earlier this
month. More information on how to submit
a nomination is available at www.childlife.org/
Membership/NominationsandVoting.cfm.
All nominations are due by December 7, 2012.
To learn more about the nominations process
for the CLC Board of Directors, check out the
Executive Director’s Blog in CLC Community.
Child Life Council. (1990). Official documents of the Child
Life Council. Bethesda, Maryland.
Gaynard, L., Wolfer, J., Goldberger, J., Thompson, R.,
Redburn, L. & Laidley, L. (1998). Psychosocial Care of
Children in Hospitals. Rockville, MD: Child Life Council.
Knafl, K., Breitmayer, B., Gallo, A., & Zoeller, L.
(1992). Parents’ views of health care providers: An
exploration of the components of a positive working
relationship. Children’s Health Care, 21, 90-95.
McCue, K. (2009). Therapeutic relationships in child life.
In R. Thompson (Ed.), The Handbook of Child Life
(57-77). Springfield, IL: Charles C. Thomas Publisher,
LTD.
quick. 2012. In Merriam-Webster.com. Retrieved June
19, 2012 from http://www.merriam-webster.com/
dictionary/quick.
rapport. 2012. In Merriam-Webster.com. Retrieved June
19, 2012 from http://www.merriam-webster.com/
dictionary/rapport.
Stuart, G. W. & Sundeen, S. J. (1995). Principles and
practices of psychiatric nursing (5th Ed.) New York,
NY: Mosby.
Thorne, S., & Robinson, C. (1989). Guarded alliance:
Health care relationships in chronic illness. Image,
21, 153-157.
A Publication of the Child Life Council
9
BULLETIN
FALL 2012
Academic Preparation Task Force 2020 Advances Profession
Child Life Council Academic Preparation Task Force
T
he Academic Preparation Task Force, or
Task Force 2020, was developed in April
of 2012. The mission and/or goal of this
task force is to “recommend the progression
of steps and a timetable whereby, effective
beginning in 2020, all newly credentialed
Certified Child Life Specialists must hold an
advanced degree from an academic program
that has been accredited by CLC.”
While this end goal is a firm decision
decided upon by the CLC board, the process
to get there is open for exploration and
development.This exploration and subsequent recommendations will be the focus
of our task force over the next 18 months as
we strive to develop an inclusive rather than
exclusive process. As such, this time frame
may be adjusted if it is determined that doing
so will better enable due diligence in all areas.
Careful consideration was given to the
composition of this task force to ensure
a balance of not only academicians and
clinicians, but also seasoned professionals and
those that are newer to the field of child life.
In taking on an endeavor of this magnitude,
we felt it was important to have representation across the generations and with varying
roles and experience in the field of child life.
The selection of task force members was in
keeping with the progression of our field and
embodies the makeup of our membership.
During the CLC conference in Washington, DC, we were fortunate to have the
chance to host a town hall meeting. This
provided a wonderful opportunity to present
our Myth Busters PowerPoint and dialogue
with colleagues about this goal within CLC’s
2012-2014 strategic plan (Goal 1, objective
C). We appreciated receiving your perspectives and insight.
We are currently compiling and reviewing
relevant documents already developed by
the Child Life Council in addition to those
from other related organizations. This review
has demonstrated the steady progression our
profession has already made in the academic
preparation of child life specialists. We plan
to build on these strengths as we explore
pathways and make recommendations for
future processes.
One path currently being explored is the
possibility of an interim process whereby
academic child life programs may qualify for
endorsement by CLC. Endorsement has been
discussed previously by CLC. We will fully
examine and potentially build on the work
previously completed in this area as we consider the possibility of this interim process.
We intend to provide information about this
and other possible recommendations through
a variety of channels over the coming months
to ensure the membership remains informed
of our task force’s ongoing work.
We, the 2020 Task Force, are honored to
be part of this collaborative effort. We are
deeply committed to the Child Life Council,
its membership, and the process of enhancing
the academic preparation of child life specialists. We look forward to this journey and the
ongoing advancement of our profession.
Milestones
Terry Duncan, CCLS, London Health Sciences
Centre in London, Ontario, Canada, is retiring
following his 32-year commitment to the
profession.
Quinn Franklin, MS, CCLS has accepted a
leadership position at MD Anderson Cancer
Center (MDACC) - The Children’s Cancer Hospital,
as Manager of the Child, Adolescent, and Young
Adult Life Department. She will start her new
position in October 2012. Previously, she was a
Research Specialist at Texas Children’s Hospital.
Quinn also serves as a member of the Child Life
Council Board of Directors.
Kathryn (Kate) Shamszad, MS, CCLS, has
accepted the clinical manager position in the
Division of Child Life and Integrative Care at the
Cincinnati Children’s Hospital Medical Center. She
will start her new position in November 2012.
Previously, she was the Program Director of Child,
Adolescent and Young Adult Life at MD Anderson
Cancer Center in Houston, Texas. Kate also serves
as a member of the Child Life Council Board of
Directors.
10
A Publication of the Child Life Council
BULLETIN
FALL 2012
Worldwide Outreach Scholars 2012
privilege to attend this learning and formative
experience. Thank you.
continued from page 7
Attending the conference encouraged
me to read more and to learn more. It has
inspired me, more than I have been before,
to see child life established as a profession
in South Africa. I am motivated to communicate the scientific basis of this profession
more effectively as well as to effectively
communicate the transferable skills that I
acquired by attending the conference. The
South African context differs widely from the
USA and Canada in terms of resources, facilities, education, manpower, language barriers
(we have 11 official languages), expectations,
and collaboration with other professions. At
the same time, we share similarities and have
remarkable resemblances: our children are
children just like yours. They have strengths
and vulnerabilities and they are in need of
psychosocial support, especially when it
comes to health care. As a profession, child
life specialists have a pool of knowledge, skill,
and competence that has been accumulated
over a period of 30 years. Your strong foundation of knowledge and research has contributed to make the child life profession what it
is today -- a science in its own right. I think
the greatest strength and potential lies in
collaboration. In the words of our past president Paul Kruger: “Unity creates strength.”
I am hopeful and fervently determined to
see child life established as a profession in
South Africa.
when Tori (Stage 3 High Risk Neuroblastoma
patient, successfully treated) endured her
aggressive treatment at Cook Children’s
Medical Center, Fort Worth, TX. It is there
where the little girl met the experts in the
psychosocial needs of children, who proved
over and over that helping the sick child and
his/her family makes a huge difference in
their lives.
After the treatment, the family came back
to Romania with a clear vision and started
to act to make their dream possible. When a
team of specialists from the above-mentioned
hospital came to introduce their caring profession to Romania I was asked to translate
for them. The concept seemed amazing and
I felt inadequate thinking that I will get to
work with dying children. But what first
seemed to be a one week experience has
turned into a lifelong vision. What first felt
far away from my comfort zone, now feels
my exact comfort zone and the most fulfilling
professional experience ever. After completing my internship at Cook Children’s and
taking my certification exam last November,
I am now the only CCLS in Romania and I
dream about making child life happen in my
homeland, too.
I now have many burdens on my heart,
such as the children screaming in treatment
rooms with no support, those held down or
told that they are bad, and the children told
that they are getting better and going home
soon even in the last day of their life. We now
have a plan and we have started to advocate
for the improvement of the medical services
and introduction of psychosocial support
programs in children’s hospitals across
Romania and the surrounding countries. We
are planning to develop the Master’s Program
at Emanuel University to have a special
component in Child Life studies and expand
programs to provide targeted education and
training to physicians and medical students
in Romania.
The psychosocial care offered in Romania
is very scanty and often absent. Romanian
laws require one psychologist for every
200 beds; this psychologist evaluates the
children with various disabilities and does
psychotherapy with those with behavioral
or emotional disorders. There is one social
A Publication of the Child Life Council
worker, who mainly does paperwork and
hardly ever interacts with the patients. Other
than our two-years-old, volunteer-based
program in the Oncology Unit, there are two
child life programs in Romania. Their main
aim is to prevent abandonment, delimiting
from the main objectives of a traditional
program. In the near future we are starting a
pilot program in the emergency department
and hope to be able to extend it to the other
units after proving its effectiveness.
The Child Life Council 30th Annual
Conference was very inspirational and it was
so uplifting to be among exceptional professionals who are willing to share their expertise
and to encourage the beginners. I watched
the anniversary movie with tears running
down my face and with the dream that we
will achieve similar success in our part of the
world in the long term. Anyone willing to
join the vision is welcome.
Karen Van Zijl,
Master of Diaconiology,
University of South Africa
Attending the 2012 CLC conference on
professional issues was like a homecoming to
me. Although my co-attendees were strangers
at first, their shared passion for rendering
quality care to children made me feel right at
home. What an amazing and life-changing
experience it was to attend this conference.
Although I have read extensively about child
life as a profession and watched the videos
on the CLC website’s YouTube section, it did
not prepare me for the rich experience that
awaited me in Washington, DC. To be in
a room with hundreds of other professionals that shared my passion and vision was
exhilarating to say the least. The opportunity
to meet with professionals that have been in
the field of child life for so many years and attending sessions where nuances were discussed
on topics that we in the South African context
have not even thought of broadened my
horizon tremendously. As a group of people
I experienced all the child life specialists
to be warm, friendly, helpful, extremely
generous, and approachable. The respect,
warm-heartedness, and academic excellence
with which child life specialists approach their
profession inspires me to do the same. What a
Worldwide Outreach
Scholarships Available
for International
Conference Attendees
CLC is offering scholarships to assist up to
three international attendees with the costs
associated with attending the CLC Annual
Conference on Professional Issues, which will
take place in Denver, Colorado May 16-19,
2013. Each scholarship will cover registration
for the conference, up to five nights lodging at
the conference hotel, actual cost of economy
round-trip airfare, and a small stipend for
meals and incidentals. CLC may at its discretion
also award one or more partial scholarships.
For more information, or to download an
application form, visit www.childlife.org/
AnnualConference/ConferenceScholarship.cfm.
11
11821 Parklawn Drive, Suite 310
Rockville, MD 20852-2539
ELECTRONIC SERVICE REQUESTED
VOLUME 30 • NUMBER 4
CLC Calendar
October
3
15 15 17 31 CLC Webinar: Implementing Evidence-Based Practice into Clinical Practice
Deadline for Bulletin and Focus articles for Winter 2012 issue
Deadline for written requests to withdraw from November Administration of the Child Life Professional Certification Exam
Deadline for CLC Salary Survey responses
Late Deadline to recertify with Professional Development Hours
(late fee and additional paperwork required)
November
1-15 Child Life Professional Certification Exam Administration Testing Window
2 CLC Webinar: Child Life Specialists Working in Hospice and Palliative Care Settings: Making Every Moment Count
4 CLC 30th Annual Conference Sponsorship Deadline for Inclusion in the Conference Program
8-10 CLC Board of Directors Meeting
December
7 Deadline for submission of nomination materials for the CLC Board of Directors
31 Last day to reinstate Lapsed CCLS credential
January 2013
1-31 Start planning your Child Life Month events and activities for March!
15 Deadline for Bulletin and Focus articles for consideration in the Spring 2013 issue
31 Child Life Professional Certification Exam Applications due for those educated outside of the US or Canada
31 Child Life Professional Certification maintenance fees due
FALL 2012