bindy sweett honored as 2010 mary ... - tufts university · nicole almeida, ms, ccls, winthrop...

Bindy Sweett Honored as 2010Mary Barkey Clinical Excellence Awardee

The Child Life Council established the Mary Barkey Clinical Excellence Award in2009 to recognize child life specialists who have demonstrated exemplary child lifecare and a high level of clinical skill. The inaugural award was presented to Bindy

Sweett, CCLS, at the 28th Annual Conference on Professional Issues in Phoenix, Arizona.

What is clinical excellence? The Webster Dictionary defines excellence as the “state of possessing good qualities in an eminent degree; exalted merit; superiority in virtue”(www.webster-dictionary.net). The ten criteria developed for the award were designed tofocus on key tenets of providing clinical excellence and quality psychosocial care. Twoendorsement forms were required as part of the nomination process from CLC members.Although the names of the individuals remain confidential, with their approval, we arepleased to share some of their words as to why Bindy Sweett exemplifies clinical excellence.

A. Demonstrates the ability to work collaboratively with other health care team disciplines inthe delivery of patient care which results in positive outcomes for patients

Bindy has worked with numerous teams including Cardiology, Pain Service, SurgicalDay Care, and Pre-Admission. Bindy was instrumental in establishing child life services inSurgical Day Care and has made child life services integral to the care patients and familiesreceive before surgery and procedures. In addition, Bindy has worked for many years withthe Children’s Heart Network. Within the cardiac team, Bindy has worked extensively atintegrating child life – she is a valued healthcare professional and team member.

INSIDE

2 Research Review:Parental Presence for Anesthesia Induction

3 New! Executive Editor Column

4 Spirit of Giving Awards

4 Role of Child Life During H1N1 Epidemic

5 The Value of School Reentry

In Focus:ZORA Camp4All:A Virtual Community to Augment the Hopefulness of Pediatric Camping

VOLUME 28 • NUMBER 3 SUMMER 2010

The Child Life Alphabet

IS FORHEALTHCAREEDUCATORS: PROMOTING OPPORTUNITIES

FOR EFFECTIVE LEARNINGMary Cataletto, MD, Claudia Fernandez, MD,Nicole Almeida, MS, CCLS, Winthrop University Hospital,Mineola, NY

We all know that repetition facilitates theretention of factual information andthat the same information presented

in different ways increases the likelihood thatit will be understood. This is particularlyimportant for children who have repeatedemergency department visits or extended hospital stays. Using asthma as an example,

the National Institutes of Health (NIH) recommends that we take every opportunityto educate asthmatic children about their disease, its triggers, and their individual actionplan in an effort to minimize acute care visitsand hospitalizations.

With grant funding from the AsthmaCoalition of Long Island, a multidisciplinaryteam composed of members of the pediatricstaff of Winthrop University Hospitalembarked upon a collaborative project whichprovided children in emergency and hospitalsettings with a tailored educational interven-tion. Child life specialists were trained in asthma fundamentals and given interactivetools to work with medically stable children in the emergency department (ED) and

continued on page 7

continued on page 9

Bindy Sweett, CCLS

A s I reflect uponthe previousyear, I am

amazed by andproud of all of the work undertaken andaccomplishments achieved by the CLCBoard of Directors, committees, special taskforces, CLC Executive Director DennisReynolds, and the Child Life Council staff.

It has been a privilege and a pleasure to have worked with such a talented anddedicated group of professionals, each committed to effecting positive change for our membership.

At this juncture, we find ourselves a strongand fiscally viable membership organization;an organization which has implementedmany new and exciting initiatives. Some of these include:

• The Mary Barkey Clinical ExcellenceAward was established and presented atthe CLC Annual Conference in Phoenixto Bindy Sweett, CCLS.

• Worldwide Outreach Scholarships, wereawarded to allow four individuals fromaround the world to travel to Phoenix andattend the Annual Conference.

• Three task forces were established as aresult of recommendations coming out of the 2009 Academic Summit. Theseinclude the Internship Task Force,Academic Task Force, and the Researchand Scholarship Task Force.

• The Patient Ratio Task Force was anadditional task force formed to review thecurrent recommended child life specialist-to-patient ratio, identify a reliable measurefor a needs assessment, and determinewhat type of data collection tool is needed.

• CLC’s online systems and outreach wereexpanded to include opportunities forenhanced professional networking andresource sharing via CLC Community,educational webinars, an improved mem-ber directory, CLC pages on Facebook,Twitter, LinkedIn, and more.

In closing, I would like to once againthank many individuals for their kind support during my year as President. It hasbeen both an exhilarating and humblingexperience to lead this organization throughsuch an exciting time of progress. As I handover the gavel to incoming President EugeneJohnson, MA, CCLS, I look forward joiningall of you in promoting CLC’s continuedgrowth and success.

2 A PUBLICATION OF THE CHILD LIFE COUNCIL

BULLETIN SUMMER 2010

PRESIDENT’S PERSPECTIVE

The Year in ReviewEllen Good, MS Ed, CCLSYale-New Haven Children’s Hospital, New Haven, CT

Child Life Council Bulletin/FOCUS11821 Parklawn Drive, Suite 310, Rockville, MD 20852-2539

(800) CLC-4515 • (301) 881-7090 • Fax (301) 881-7092www.childlife.org • Email: [email protected]

President Executive Editor Associate Editor Executive Director Managing EditorEugene Johnson Anne Luebering Mohl Jaime Bruce Holliman Dennis Reynolds Melissa Boyd

Published quarterly, mailed the 18th of January, March, June and September. Articles should be submittedby the 15th of January, April, July and October. Please see Submission Guidelines in the Bulletin Newslettersection of the CLC Web site for more information.

For information on how to place an ad in the Bulletin, please refer to the Marketing Opportunities section of the CLC Web site: http://www.childlife.org/Marketing Opportunities/

RESEARCH REVIEW

Parental Presencefor AnesthesiaInduction: Is It BestPractice?A review of: Chundamala, J., Wright, J.G., & Kemp, S.M. (2009). An evidence-based review of parentalpresence during anesthesia induction andparent/child anxiety. Canadian Journalof Anaesthesia, 56(1), 57-60.

Lindsay Heering, MS, CCLS, CTRS, Children’s Hospital ofMichigan, Detroit, Michigan

Having surgery, particularly anesthesiainduction, can be anxiety-provokingfor children. Child life specialists rou-

tinely advocate for parental presence as astrategy to increase positive coping, reduceanxiety, and enhance compliance. Shouldthey? Is parental presence best practice?Despite the belief that it is, a recent system-atic review failed to find support forparental presence as an intervention to alle-viate anxiety.

This systematic review included studieswhich examined the effectiveness of parentalpresence as compared to other interventionsor standard care. Studies measuring anxietypost-discharge were excluded. The studieswere found by searching MEDLINE (1950-2008) and EMBASE (1980-2008). Onlystudies that were rated at evidence levels I-III were included, for a final group offourteen studies, published between 1988and 2006. None of these studies were ratedas level I evidence. These studies assessed parent and child anxiety using physiological,observational, and self report measurementsat varying times during the surgery process.

In studies that focused on parent anxiety,the authors found no significant differencesbetween parents who were and were notpresent for induction. Only one significantdifference appeared in a study where parents’diastolic blood pressure and pulse rates werelower for the non-presence group.

Children’s anxiety was examined inanother selection of studies. The majorityfound no significant differences between

Continued on page 7

It seems that we’realways hearingabout change. It’s

coming at us fromevery direction;from manufacturers

touting new and improved products, frompoliticians advocating for new policies, andfrom corporations striving to survive in achanging economy.

I would like to highlight a few changesyou’ll be noticing in Bulletin and Focusover the next few issues. You’ve probablyalready picked up on the most obviouschange: a new color scheme. The editorialteam thought this might be an opportunetime to change things up a bit and give thepublication a slightly fresher look.

Another immediate change is more subtle:there has been a transition in the editorialteam. Joan Turner, who has done an amaz-ing job in her service as Executive Editor fortwo years, is rolling off of the editorial teamand has taken on a new role as Chair of theResearch and Scholarship Task Force,

although she will continue to contribute toFocus as a member of the Focus ReviewBoard. I have stepped in as Executive Editor,and Jaime Bruce Holliman is taking over asAssociate Editor. In addition, we’d like tothank Estelle Argie-Hawley, Jane Darch,Suzanne Graca, Diane Hart, and EileenMapes for their service as they finish theirterms on the Focus Review Board.

Probably the most exciting changes inBulletin come in conjunction with the intro-duction of CLC Community. As we cometo rely on this new way for CLC members to connect individually and as a group, youwill see such new tools as a Bulletin blog,opportunities to comment on and discussBulletin/Focus content, and links to resourcesfor those interested in exploring further afteran article piques their interest. We expectthat the connection between our print publi-cations and CLC Community will evolve aswe all discover the most useful ways of usingCLC Community.

One change that we want to encourage isthe way that each of you as CLC membersthinks of yourself as a potential contributorto Bulletin/Focus. The editorial team knowsthat child life specialists are innovative peo-ple with exciting ideas, research interests, andprogramming successes to share. Althoughin our jobs, we are accustomed to loweringour inhibitions and putting ourselves “outthere” when working with children—singingsongs, acting goofy, discussing sensitive subjects without cringing—we are often a bit more hesitant to let our guards downwhen our intended audience is our peers, the community of child life specialists. Weknow that we all benefit greatly from whatwe learn from each other, so we would liketo encourage and assist potential authors inany way we can. Browse the Bulletin/Focussection of the website; there are useful toolsto guide you through the writing and sub-mission process. Contact a member of theeditorial team; our names are in each issue.If you feel that you have something impor-tant to share but are concerned that your

writing skills are not up to par, consider ask-ing a colleague or a friend to serve as a writ-ing coach. Someone you know who writeswell may be more than happy to help youdevelop your skills in that area. Finally, asyou are preparing your manuscript, pick up acopy of the new version of the PublicationManual of the American PsychologicalAssociation (often called the APA StyleGuide). A new sixth edition was publishedthis year. The CLC is not the only organiza-tion undergoing change!

One final change that I’d like to mention isthat we will be introducing a new columnthat will serve as an overview of the content of each issue of Bulletin/Focus. Some othercolumns or content that you have seen in Bulletin over the years may eventually shift to CLC Community as it becomes a key communication tool for our organization. Asthese changes take place, this new column willserve as a bit of continuity from issue to issue.

Change can be a bit unsettling, but it canalso be a time of growth. Knowing that thechanges that Bulletin/Focus will undergo havebeen planned thoughtfully and are designedto move us in a positive direction is very exciting. If you have other ideas forimprovement, please contact me. I look forward to serving as your Executive Editor.

FROM THE EXECUTIVE EDITOR

Changes for BulletinAnne Luebering Mohl, PhD, CCLS, Johns Hopkins Children’s Center, Baltimore, MD

A PUBLICATION OF THE CHILD LIFE COUNCIL 3


Child Life Council EXECUTIVE BOARD 2010-2011President Eugene W. Johnson, MA, CCLS

President-Elect Toni Millar, MS, CCLS

Past President Ellen Good, MSEd, CCLS

Secretary Kristin Maier, CCLS

Treasurer Sharon McLeod, MS, CCLS, CTRS

Directors Jodi Bauers, CCLSLisa Ciarrocca, CCLSSharon Granville,MS,CCLS,CTRS,NCCAnita H. Pumphrey, MS, CCLS

CACLL President Michele Wilband, MS Ed, CCLS

CLCC Senior Chair Kathleen O’Brien, MA, 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.

UPCOMING EVENTS

8th Annual Child Life Directors Retreat and Conference

October 10-13, 2010Camelback Inn Marriott Resort and Spa

Scottsdale, AZContact: Chris Brown, [email protected]

or 512-324-0146

16th Annual Midwest Child Life Networking Conference

“Child Life: To Places You Have Never Been Before”November 6-7, 2010

Children’s Mercy Hospitals and ClinicsKansas City, MO

Contact: Lucy Raab, [email protected](816) 802-1264

Web site: www.midwestchildlife.com

CLC awarded the Spirit of Giving award totwo recipients this year at the AnnualConference in Phoenix, Arizona.

Starlight Children’s Foundation andCharles D. Rumbarger, CAE, have beenselected as the 2010 recipients of the ChildLife Council Spirit of Giving Award. TheSpirit of Giving award, established in 2007,is designed to recognize organizations andindividuals making significant monetary orin-kind contributions that have a positiveimpact on child life programs on a nationalor international level.

For more than 25 years, StarlightChildren’s Foundation has helped seriouslyill children and their families cope withtheir pain, fear, and isolation through enter-tainment, education, and family activities. In fulfilling this mission, Starlight bringstogether experts from pediatric healthcare,technology, and entertainment to createprograms that educate, entertain, and

inspire seriously ill children. In providingStarlight programming, the child life spe-cialist is equipped with invaluable resourcesto help children and families cope with thechallenges they face daily.

Charles D. Rumbarger, CAE, is one ofthe association community’s most experi-enced and acknowledged professionals.Currently President of OrganizationGuidance Group, LLC, his professional pathhas spanned almost forty years. In 2008, theChild Life Council initiated a GovernanceTask Force to review best governance prac-tices in associations and board development.Mr. Rumbarger served as a pro-bono con-sultant offering CLC expert leadership,invaluable knowledge, significant time, andresources. During CLC’s Executive DirectorSearch in 2009, Mr. Rumbarger provided asmooth transition of leadership, setting thestage for ongoing growth and developmentof the organization and the profession.



CLC Recognizes Leaders in PhilanthropicSupport at 28th Annual Conference

The H1N1 influenza strain swept into ourlives in Spring 2009, taking everyone bysurprise. By June 11, the World Health

Organization declared it a Level 6 Pandemic.Healthcare providers quickly responded, andby the second phase in Fall 2009, there wasan unprecedented readiness in terms ofworldwide immunization programs. Bestpractices were in a state of flux, evolving to stay in step with knowledge about the disease and dealing with the escalating numbers of the affected. By March 7, 2010,more than 213 countries and overseas territo-ries or communities had reported laboratoryconfirmed cases of pandemic influenzaH1N1 2009, including at least 16,713deaths (http://www.who.int/csr/don/2010_03_12/en/index.html). Child life was one discipline that responded and adapted to the growing demands of H1N1.

OUR EXPERIENCE IN WINNIPEGWinnipeg was the North American

epicenter during phase one of the H1N1pandemic, which provided us with uniqueexperience and insight to share with facilitiesaround the world. As the only tertiary carehospital serving all of Manitoba, NorthwesternOntario and Nunavut, Health Sciences CentreWinnipeg was hit hard in Spring 2009.

There were 892 reported cases of H1N1 inthe first wave; the second saw 1,774 reportedcases in Manitoba (population 1,148,401).Canada aimed to immunize every citizen.Over 250,000 people in Winnipeg were vaccinated, out of a population of 694,668.However, the disease spread especially rapidlyin our remote Northern communities. Visitsto the Children’s Emergency Departmentmore than doubled, with four times morepatients than usual with influenza-like symptoms. Families were understandablyanxious. Child life specialists were quicklycalled upon to make adaptations in their programs that would protect the patients,

staff, and public and make them feel safewhen coming into the hospital.

The Winnipeg Regional Health Authorityissued daily or weekly communications withupdates regarding the numbers and spread ofthe disease and changes in protocols, includ-ing complex consultation with InfectionPrevention and Control Practitioners regard-ing cohorting and clustering patients withflu-like illness, increased use of personal protective equipment and hand sanitizers,restrictions on the numbers of visitors,removal of shared items in waiting rooms,increased hand wash stations, increased signage regarding hand washing and coughetiquette, immunization clinics, and infor-mation about symptoms and what staffshould do if they had symptoms. Underthese missives, the Child Life Departmentworked with the Child Health leadershipteam and Infection Prevention and Controlto assess and adapt our practices.

CHILD LIFE SPECIALISTSRESPOND TO THE OUTBREAK

During the first outbreak, child life spe-

Role of Child Life During the H1N1 EpidemicRenée Ethans, CCLS, Children’s Hospital, Health Sciences Centre, Winnipeg Regional Health Authority, Winnipeg, Canada

Continued on page 6

Charles D. Rumbarger, CAE, President of Organization Guidance Group, LLC

Wide eyes stared at Samuel* and took inevery detail of his newly changedappearance. The fifth grade class

seemed very hesitant to speak at first, and noone was willing to break the nervous silence.Our patient lingered behind the social work-er and me, unwilling to face his classmates.He watched and waited while I spoke to theclassroom full of his peers, teachers, andcounselors. As I finished answering eachchild’s question, ranging from relevant topicsto slightly more digressive themes, I saw asmall smile on our patient’s face. He finallycracked a grin over a particularly interestingquestion regarding the possibilities of healinga pet dog’s leg with an external fixator. Afterthis question, Samuel felt comfortableapproaching his classmates, showing themthe Taylor Frame fixator on his leg, andpointing out his skin grafts. Imagine thesame classroom scenario if that patient hadnot received the benefits of a school reentryprogram. Would he have had the tools andknowledge to face his classmates, or wouldhe have shut down and withdrawn from theconfused looks and questions of his peers?

Months earlier, as the result of a car acci-dent, this patient suffered a brain injury, alongwith damage to his leg that required numer-ous surgical skin grafts and an external fixator.He had been an inpatient in our NeurologicalRehabilitation (Neuro Rehab) program forthree months and would be returning toschool a few weeks following his discharge.To ease his transition back to school, ourNeuro Rehab team created a successful schoolreentry presentation, delivered it with thepatient at his school, and allowed him to havesupport for such a challenging situation.

Experiencing this moment of true interdis-ciplinary collaboration opened my eyes tothe importance of providing school reentryresources for my patients. The patients inthe Neuro Rehab population that I workwith have a wide variety of diagnoses thatinclude traumatic brain injury, brain tumor,Guillain-Barre Syndrome, epilepsy, and oth-ers. Often, these patients are hospitalized fora lengthy period of time, ranging from threeweeks to several months. The patients onthe Neuro Rehab service face a wide range ofnew challenges before, during, and after theirhospitalization. One particular, often over-looked challenge for these patients is thetransition back into the school environment.

Research shows that a well-constructedschool reentry program can be vital to a successful social reintegration experience for hospitalized patients: “early interventionhas the potential to improve child academicoutcomes and promote effective coping with any persistent changes in functioning”(Deidrick & Farmer, p. 23). Key compo-nents to an effective reentry program include“assessment, multidisciplinary teaming, facili-tation of peer interactions, and planning forthe provision and withdrawal of support”(Deidrick & Farmer, p. 23). Knowing thechild’s strengths and weaknesses pre- andpost-injury or illness can allow the care teamto construct an individualized and ideal reentry program. A multi-disciplinary teamapproach provides a variety of perspectivesand ideas in preparing patients for theirreturn to the classroom. Communicatingwith the school before, during, and after apatient’s hospital stay enables the team to

better understand the patient and allows thepatient to still feel connected to his or herschool. Finally, the school reentry team mustknow when it is appropriate to step back andallow the patient and school to gain indepen-dence using the resources provided for them.

Research shows that “the number of children who return to school with chronic illnesses has increased during the past decade”(Kliebenstein & Broome, p. 579). Schoolstaff members do not feel adequately preparedto welcome patients back into the classroombecause they do not have specific trainingregarding the patients’ diagnoses or thechanges they have experienced during theirtime in the hospital. Kliebenstein & Broomestate that little information is known about theimpact of a hospitalized child’s return to schoolon school personnel. Even less informationexists to pinpoint parental issues regardingreturn to school for these hospitalized children(Kliebenstein & Broome).

A study was conducted to label the issuesand needs of school employees as well as par-ents of children with chronic illnesses duringtheir transition back to school. Focus ques-tions were given to participants of the studyand included: the child’s school reentry timeframe, training for school employees regard-ing the patient’s care, positive features of thereentry process, components of the processthat require improvement, and suggestions toprovide an easier and less stressful schooltransition (Kliebenstein & Broome). Resultsshowed that parents experienced several con-cerns regarding their child’s school reentryprocess, including a lack of attention to theirchild’s new and specific needs throughoutthe school day. An overwhelmingly prevalentconcern for parents of hospitalized childrenwas the lack of communication betweentheir child’s school and hospital (Kliebenstein& Broome). This parental concern makes itcritical for us as child life specialists toembrace our role as patient and family advocates and facilitate school reentry opportunities for our patients.

One goal of the Neuro Rehab program atSt. Louis Children’s Hospital is to create aschool reentry presentation for every school-age patient who completes our program.Collaboration among members of the NeuroRehab team is the key to creating a successfulschool transition for our patients. I workclosely with our hospital’s school teacher and

The Value of School ReentryMegan Stodard, CCLS, CIMI, St. Louis Children’s Hospital, St. Louis, MO



*Patient name has been changed for confidentiality Continued on page 11

MilestonesPUBLISHEDBarb Gursky, MA, CCLS, was recently published aslead researcher in the April issue of Journal ofDevelopmental & Behavioral Pediatrics, for herarticle,“The Impact of Psychosocial Interventionon Procedure-Related Distress in Children BeingTreated for Laceration Repair in the PediatricEmergency Department.”

Nora Hager, MA, CCLS, published a chapter:“Education of Child Life Professionals in ChildHealth” in the book Encyclopedia of Family Health,by M. Rosenberg-Craft and S.R. Pehler (Eds.).

AWARDSNora Hager, MA, CCLS, was recently awarded theDistinguished Teaching Award by the College ofHuman Environmental Sciences at the Universityof Missouri Columbia. Nora was recognized forher contributions to the child life program at heruniversity, and her dedication to her students.

cialists continued providing psychosocialservices on inpatient units. Staff followedinfection control protocols and continued tosee patients to offer preparation, teaching,support, and diversion. Our biggest changewas to suspend group activities, so we closedour main playroom to groups. Fortunately,we were able to open it up to patients on aone-on-one basis, to allow them a changefrom their wards. Priority was given to long-term, chronic patients, who each couldspend at least an hour in the playroom.However, changes to protocol were requiredin order to provide this level of care.

Because the playroom is either lockedwhen not in use, or supervised when open,the playroom space and materials are moni-tored consistently. Playroom staff takes greatpride in the toy- and space-cleaning policiesthat have been developed and revised overmany years. During the outbreak, the fol-lowing protocol was followed: before entry,we screened patients for healthiness, showedthem cough and sneeze etiquette (i.e. intothe elbow) and asked them to use the handsanitizer. The playroom was only closed fora short period during the first outbreak, andby following these new protocols we did notclose it at all during the Fall 2009 outbreak.

ADAPTATION OFCHILD LIFE PRACTICES

There are a variety of actions that childlife departments can undertake during anepidemic, and indeed, we have now incorpo-rated them as standard practice. News aboutH1N1 was at the media forefront and thereports concentrated on ways to preventtransmission. People were scared, and peoplecared. Families were very respectful andunderstanding about the introduction of the use of hand sanitizer, visitor restrictions,and the removal of shared items. In fact, we found that families were extremely cooperative and grateful for the measurestaken by the hospital during the outbreaks.

REMOVAL OF SHARED TOYS ANDTHE INTRODUCTION OF GIVEAWAYS

Perhaps the weakest infection control linkunder our purview involved waiting roomsand unsupervised playrooms. Items in these

areas were not supervised with regard to cleaning or infection control, and thus were agreat potential source of infection transmis-sion. The answer was obvious, fast and easy –remove all shared items from these areas. Wethen supplied “giveaway” items for waitingrooms, such as colouring sheets with a fewcrayons/markers and word search sheets.Packets could be made up ahead of time andbulk items were separated for easy access. Inorder to reduce contamination when givingchildren a choice, we created a display of someof the options (e.g. on a tray or basket) for theselection of materials rather than allowing children to rummage through the selection.

Child life specialists are assigned to inpatient wards that have unsupervised play-rooms. Toys were culled and removed fromthese rooms. We recommended placingtoys/games in locked cupboards, leaving outonly a few items at a time, and rotating thechoices. We also kept toys available forpatients to borrow from the ward playroomfor isolation rooms. These toys were thencleaned before being returned to circulation.In addition to single-use toys, giveaway itemssuch as colouring books, sudoku books,decks of cards, games, and toys were offeredto patients to keep. Unit staff felt relievedwhen these changes occurred, because theyincreased the organization of toy inventoryand eased the burden of cleaning.

TOYS FROM HOME

Child life departments have always encouraged families to bring a few personaltoys/comfort items from home for their childto play with when they come to the hospital.Even so, many people have come to expect

toys in waiting rooms and may not bring any-thing to appointments. We recommendedthat this suggestion should be made whenappointments were being made so that thefamily was prepared to bring their own diversions. It was explained that this measurewas being taken to protect children from thepossibility of infection from shared items. Infact, in our PreAdmission Clinic/Day Surgery,staff even encouraged families to clean theirstuffed animal before bringing it to hospital;families understood and appreciated ourattention to the health of their children. We also encouraged families of inpatients toretrieve their child’s personal items from homefor variety. The giveaway items we have on hand were used as supplements, or forchildren who came with nothing to play with.

HAND WASH STATIONS

One of the new practices we introducedwas to install hand wash stations outside ofour playroom, closed-circuit TV station(CHTV) studio, and Book CornerLibrary/Schoolroom. We placed a sign asking everyone who entered to please usethe hand cleaner. Although we have alwayspracticed strong infection control in ourplayroom, we can always improve, and thisensured that everyone who entered was starting out with clean hands. This, in addition to screening for healthiness andteaching coughing/sneezing etiquette, hascontinued as standard practice.

ALTERNATE DIVERSIONS

With the removal of toys from waitingrooms, we recommended placing a televisionand DVD player in a quiet corner of eachwaiting room to entertain children. Weintroduced a storytime program in ourChildren’s Emergency Department waitingroom and Children’s Clinic (outpatient)waiting rooms. Our librarians trained andoriented volunteers who rotated throughthese areas. This is a “cleaner” alternative toshared books and magazines in waiting areas.

OTHER MODIFICATIONS

Our child life department is also home toa daily an interactive live show on CHTV,music therapy, clowning, a library for children and teens, and a resource library forfamilies, students, and staff. Practices weremodified in each of these areas to reduce thetransmission of infection. For example, thetherapeutic clown suspended group activities;



Child Life During H1N1Continued from page 4

continued on page 10

Families were very respectful

and understanding about the

introduction of the use of hand

sanitizer, visitor restrictions, and

the removal of shared items. In fact,

we found that families were

extremely cooperative and grateful

for the measures taken by the

hospital during the outbreaks.

Kathryn A. Cantrell, MA & Marina U. Bers, PhDThe Developmental Technologies Research Group, Eliot-Pearson Depratment of Child Development, Tufts University, Medford, MA

In past research, camping interventions for youth with cancer and blood disordershave been shown to increase the youths’

sense of hopefulness (Hinds, 2004). Butwhat happens when the youth return home to their routines of doctor’s appointments and medical testing? Unfortunately, little literature addresses the re-entry phase of thecamp experience; Hinds (1988) found thathopefulness scores decreased two weeks afterprograms’ completion, indicating that thepositive, goal-oriented attitude evaporated asadolescents assimilated back into their normalroutine of chronic stressors.

The intervention described in this paperuses virtual technology to create opportunitiesfor youth to maintain their sense of hope afterthe end of camp. The Zora multi-user virtualworld platform, developed by Marina Bersand her research team at Tufts University, wasutilized to create a specific virtual space mir-roring Camp For All, a pediatric campingfacility located in Burton, Texas, that caters to both ill children and their healthy siblings(Bers et al., 2010; Bers, 2009). First intro-duced to adolescent campers (aged 13-17)with cancer (n=16), blood disorders (n=6),and their siblings (n=18) during their week at camp in July of 2009, the virtual worldallowed users to chat with their friends fromcamp, share memories, and construct virtualspaces and objects about their week. Uponreturning home, the secure software becameaccessible 24/7 and provided facilitated groupactivities to promote hopefulness in the spiritof Camp For All. The virtual world, namedZora Camp4All, remained open for threemonths until October 1, 2009.

The construct of hope is valued forenhancing quality of life for individuals experiencing an illness (Herth, 2001; Hinds,2004). Being hopeful is a significant deter-minant of psychosocial adaptation amongadolescents with a chronic illness; likewise,the outcomes of hopefulness among theseadolescents are a commitment to treatment,adaptation to symptoms, and taking care ofproblems (Hinds & Martin, 1988). Hinds(1988) found that the hopefulness of adoles-cents with a substance abuse history decreasedonce reentering the context they left. Thesame might be said for many adolescents whofind hopefulness while at camp and thenreturn to hospitals, IV poles, and lab coats.

Technological interventions, specifically virtual worlds, have been shown to benefit an individual’s need for community (Donath,1996; Bers et al., 2010). Erikson (1982)explains that the adolescent’s stage of develop-ment, identity versus role confusion, makessocial interaction and connections vital forexploring one’s identity and adult roles. Foradolescents with an illness in the family,opportunities for social inclusion are ofteninterrupted by disease-related activities such ashospitalizations or treatments (Snyder, 2000).The inclusion of a virtual world within campprogramming, in particular as a way to sus-tain the camp experience after it physicallyends, is an additional vehicle for campers tomaintain their social connections as it pro-vides community when the adolescent isunable to attend camp or is isolated withinthe hospital.

This pilot research had multiple goalsincluding determining if the hope-based,camp-inspired tool of Zora Camp4All could1) sustain the campers’ sense of hopefulnessafter their week of camp, 2) sustain the

Zora Camp4All: A VIRTUAL COMMUNITY TO

AUGMENT THE HOPEFULNESS OF PEDIATRIC CAMPING


continued on Focus page 2

ABSTRACTSummer camp has a positive impact onadolescents with serious illnesses; in fact,research shows that camp increaseshopeful attitudes by decreasing levels of anxiety related to illness (Briery &Rabian, 1999;Turuk, Kukunyei, Karolyi,Ittzes, & Tomcsanyi, 2006).Yet, the hopefulness derived from the experiencemay dissipate when the camper returnsto the chronic stress of his/her illness(Hinds, 1988).

This paper reports on a pilot study donein collaboration with Camp For All, acamp for children with serious illnesses.The Zora 3D virtual world was used tocreate a virtual space resembling thecamp facility.The goal was for campers to maintain friendships from camp andexplore how to sustain hope and com-munity.The technological interventioncalled Zora Camp4All was introduced to40 adolescents with cancer (n=16) andblood disorders (n=6) and their siblings(n=18) during their week at Camp For Allin June 2009. After that week, theyaccessed the network through home orhospital computers and joined oneanother in the virtual Zora Camp4All.

Since research indicates that campenhances hopefulness, this pilotresearch’s main goal was to discover if Zora Camp4All could sustain thecampers’ hopefulness after their week of camp was complete. The results fromthis study suggest that Zora Camp4Allmight contribute to sustaining hopeful-ness within the campers; however,significant differences were found in thedifferent populations that participated in the camp experience.

campers’ sense of social connectedness aftertheir week of camp, and 3) promote positivetechnological development (Bers, 2006).This paper will only address the first goal,whether the program could sustain thecampers’ sense of hopefulness after theirweek of camp.

THEORETICAL BACKGROUNDThe concept of hope is central to Camp

For All’s culture; ubiquitous in the languageof the staff, it even appears within the camp’sambitious motto, Love, Laughter, Hope, andHealing. The construct of hopefulness hasmorphed from the initial definition of “adesire to seek goals” to the now multi-facetedpositive psychology theory that defines hopefor adolescents as “the degree to which anadolescent possesses a comforting or life-sustaining, reality-based belief that a positivefuture exists for self and others” (Korner,1970, p. 134; Hinds, 2004).

Hopefulness places an individual at anadvantage when faced with a situation thatrequires coping. The stress and coping para-digm has guided considerable health-relatedresearch for the past two decades, and duringthis time, hope has been cited as an impor-tant variable within the paradigm. Lazarusand Folkman (1984) claim that hope can actas both an emotion-focused and problem-solving coping strategy and as a method ofcognitive appraisal. In Snyder and Lopez’s(2003) definition of hope, hopefulnessrequires action-based thoughts and behaviorsleading to a goal, actions that mirror theproblem-focused coping strategies such asdefining a problem, identifying alternatives,comparing alternatives, and selecting analternative.

Hope is consistently cited as an essentialpsychosocial resource for adolescents who are coping with a critical illness and thetreatments that accompany the experience;additionally, coping strategies that employhope are often cited as beneficial for the teen (Herth, 2001; Hinds, 2004; Hinds &Martin, 1988; Ritchie, 2001). In addition,it has been shown that “people who havegood medical information and who demon-strate a hopeful, active coping style are likelyto deal more effectively when faced with anactual illness experience” (Taylor, 2000, p.361). According to Taylor, “The hope forrecovery and return to one’s healthy life areimplicit in the cancer patient’s fighting spirit” (p.363).

Hinds has pioneered the study of hope in adolescents. Hinds’ (1988) quantitativeinvestigation of hope as experienced in agroup environment was a longitudinal studyof adolescents during treatment in a sub-stance abuse program. During the program,researchers measured hope three times usingthe Hopefulness Scale for Adolescents (HSA;Hinds, 1988): upon admission (Time 1),prior to leaving the program (Time 2), andapproximately a month after discharge (Time3). Hopefulness scores were much higherduring Time 2 than Time 1. Unfortunately,after discharge and once back into their pre-vious context, the adolescent’s hopefulnessdropped again one month later. Thus, thefindings raise questions about the ability tocreate a lasting impact on adolescents oncethe examined program is complete.

In a more recent study, Ritchie (2001)looked at the psychosocial functioning of

adolescents with cancer and examined thevariations in hopefulness amongst genderand age. The study, which included 45 adolescents with cancer, examined the relationships among stages of adolescence,gender, self-esteem and hopefulness. Thegreatest determinant for hopefulness was notage or gender, but instead self-esteem. Thisis important for the psychosocial therapy ofan adolescent with cancer as it reminds thefacilitator to reinforce not only hope, butself-esteem as well.

While Richie (2001) informs the hopeful-ness experience for adolescents with cancer, it does not answer whether this experience isuniversal for siblings and adolescents withblood disorders. For example, while thepatient is able to draw hope from a health-care team that works to maintain a positiveattitude, the sibling might not have the sameresources. Cantrell and Lupinacci (2004)found that individuals without an illnessexperienced lower mean scores of hopeful-ness when measured with the Hinds’Hopefulness Scale for Adolescents (HSA)compared to individuals with an illness.

Additionally, adolescent siblings of individuals with an illness are at increasedrisk for internalizing disorders includingdepression, anxiety, and obsessive-compulsivesymptoms (Stawski, Auerbach, Barasch,Lerner, & Zimin, 1997). Unfortunately, far less research on hopefulness has been conducted on family members of those individuals with a serious illness. Lanin-Kettering (2009), though, demonstrated thatthe social support program, SuperSibs!,increased the siblings’ sense of hopefulness;in fact, 75% of siblings noted that they feltstronger and more hopeful after receivingSuperSibs! services.

Qualitative studies across the age andhealth-illness continuums have identifiedpotential hope-fostering strategies and interventions and have laid the groundworkfor future intervention studies in clinical populations (Herth, 1990, 1993a, 1993b,Koopmeiners et al., 1997). Specifically, inter-ventions employing hope as their theoreticalbackbone have been introduced to adult pop-ulations experiencing cancer (Ferran, Wilken,& Popovich, 1992, Herth (2001). Herthemployed the Hope Intervention Program(HIP) in a study with 38 adults with firstrecurrence of cancer. Data suggested that HIPpositively affected the participants’ rebuilding


FOCUS SUMMER 2010

About the ViewsExpressed in Focus

It is the expressed intention of Focus toprovide a venue for professional sharingon clinical issues, programs and interven-tions. The views presented in any articleare those of the author. All submissionsare reviewed for content, relevance andaccuracy prior to publication.

REVIEW BOARDKatherine Bennett, MEd, CCLS

Mary Bronstein, MA, MS, CCLS

Elizabeth Cook, MS, CCLS

Joy M. Daugherty, MBA/HCM, CCLS

Kathryn (Kat) Davitt, MOT, OTR, CCLS

Thomas M. Hobson, MHA, MMEd,CCLS, MT-BC

Cinda McDonald, MEd, RDH, CCLS

Julie C. Parker, MS, CCLS

Allison Riggs, MS, CCLS

Kimberly Stephens, MPA, CCLS

Joan Turner, PhD, CCLS

Janine Zabriskie, MEd, CCLS

continued from Focus page 1

and maintenance of hope. Additionally, 92% of the participants “felt that having anopportunity to meet and share with groupmembers, feeling support of others, and real-izing that they shared many similar thoughtsand feelings was extremely helpful” (Herth,2001, p. 1016).

Cantrell and Conte (2008) chronicled theoutcome of an online intervention aimed atenhancing hope in adolescent female cancerpatients. The eight-week program alsoemployed Herth’s (2001) Hope InterventionProgram curriculum. The six participantsand the researchers met online as a grouponce a week for 2 hours each session.Participants felt that, “of all the HIP sessions,[ . . . ] those sessions in which they sharedtheir thoughts and objects of hope with theother participants” were most beneficial(Cantrell & Conte, p. 376). Participantsmentioned that just the ability to share theirstories promoted a feeling of trust and hope-fulness within the group, and months later,participants still considered the group to be a valuable addition to their lives.

While interventions employing hope havebeen introduced to adolescents diagnosedwith cancer, the same cannot be said for ado-lescents with sickle cell disease, hemophilia,or siblings of adolescents with chronic ill-nesses. This project, though, extends thesample to include campers with blood disorders (n=6) and campers who are siblingsof individuals with a chronic illness (n=18).The combination of these populations with-in the sample provides an understanding ofhow interventions like Herth’s (2001) HIPcan be employed in other arenas.

CONTEXT OF THE INTERVENTIONThe intervention, Zora Camp4All, utilizes

a virtual community developed using theZora platform created for the campers atCamp For All in Burton, Texas (Bers,Gonzalez-Heydrich, & DeMaso,2001; Bers, Chau, Satoh, & Beals,2007; Bers, 2009). The programwas introduced to the camperswhile they were attending theirweek-long session at the physicalcamp, Camp For All. This articleexamines the effects that both thecamp and the technological inter-vention, Zora Camp4All, had onthe campers; thus, it is importantto understand the two contexts of

the intervention: the physical Camp For Alland the virtual Zora Camp4All.

CAMP FOR ALL

The adolescent experiencing a serious ill-ness, either in themselves or within the fami-ly, is at a greater risk for experiencing higherlevels of hopelessness and psychosocial con-cerns, including behavior problems, poorself-concept, and social withdrawal (Briery &Rabian, 1999). Summer camps address theseconcerns by focusing on maintaining nor-malcy and instilling hope for the child whois critically ill and their siblings (Briery &Rabian, 1999). Camps throughout the coun-try vary in their overall philosophical stand-ing, but promoting a positive adaptation toillness is a common goal within the pediatriccamp community. Within the past 15 years,much has been learned about the benefits oftherapeutic camping for physically ill chil-dren, adolescents, and their families; in fact,over 80 camp facilities in the United Stateshave been built specifically for children withchronic and severe illnesses.

Camp For All provides an environmentthat facilitates efficacy in peer relationships,and an atmosphere that is caring and hope-ful. Established as a nonprofit organizationin 1993, the site is located on a 206-acreproperty in Burton, Texas, an 80-mile dis-tance from Houston. All facilities are wheel-chair accessible and barrier-free, so allcampers are able to participate in a curricu-lum that aims at providing opportunities togain self-esteem and independence whilehaving fun, learning new skills, and bondingwith others who share their challenges.

During the week that this interventionwas conducted at Camp For All, two groupswere in attendance. Camp For All hosts thehematology/oncology departments from theChildren’s Hospital at Scott and White inTemple, Texas (called Camp Dreamcatcher)

and the University of Texas Medical BranchChildren’s Hospital in Galveston, Texas(called Rainbow Connection). The two dif-ferent groups represent two diverse culturesthat merge while at Camp For All and thediscrepancies between the groups will beaddressed further as results of data collectionpaint a better picture of the differences.

ZORA CAMP4ALL

Midway through the week, the camperswere introduced to the virtual ZoraCamp4All through computers at the camp-site. Campers were given a virtual tour andwere shown the technical aspects involved inoperating the program.

The Zora platform allows for the develop-ment of virtual worlds that are tailoredtoward multiple research venues, includinghospitals (Bers et al., 2007; Bers et al, 2010).Zora is a multi-user graphical environmentdeveloped to provide opportunities for par-ticipants to construct and explore a virtualcamp. Multiple users can interact withinZora through real-time chat and interactiveavatars that represent each participant.Within the world, they can build objects,characters, and buildings to develop their vir-tual space. For example, campers were ableto construct their personal cabin and deco-rate it with furniture and pictures from theirweek at camp.

The program was designed based on Bers’positive technological development frameworkand provides technological features that allowadolescents to explore issues of identity whileplaying an active role in learning by creatingvirtual objects to share their stories (Bers,2006; Bers et al., 2007). While the campersare engaged in constructing virtual representa-tions of their week, they are also gaining tech-nological skills to aid in their developmentand boost their sense of confidence and com-petence in the technological domain.

Before the campers’ arrival atCamp For All in June of 2009, thevirtual camp was designed andmain elements of the campsite wereconstructed (Figures 1, 2, 3). Thecampers built the remainder of thevirtual space. The figures conveythe virtual space, located at thecenter of the screen, and the real-time chat box, located at the bot-tom of the screen. Additionally,

FOCUS SUMMER 2010

A PUBLICATION OF THE CHILD LIFE COUNCIL 3continued on Focus page 4Figure 1. Pre-Built Camp Gate in Zora Camp4All

the welcome page on the right sideof the screen allows campers toconstruct objects and send messages to other users.

In addition to maintaining con-nections established at camp, thevirtual world was developed toinclude activities intended to promote hopefulness, social con-nectedness, and positive technolog-ical development within the groupof campers. The Zora Camp4Allcurriculum enhances hope throughthe use of specific strategies, deliv-ered during six sequential sessions,using a small group interactive for-mat. The curriculum was basedon the Hope Process Frameworkby Ferran et al. (1992). Herth(2001) utilized the Hope ProcessFramework when designing theintervention titled HopeIntervention Program (HIP),planned to promote hopefulness inadults with a recurrence of cancer.Herth’s framework was focused on adults and did not include adolescents; thus, the Adolescents Self-Sustaining Model created by Hinds and Martin (1988) served as an additionaltheoretical base for the Zora Camp4All cur-riculum. In addition to synthesizing thesetwo formats, curriculum goals that addressedsocial connectedness and positive technologi-cal development were also included. The virtual experience began when the campersreturned to their homes after camp.

METHODIn order to examine whether the program

sustained hopefulness, a mixed methodologywas chosen. The intent in using this designwas to bring together the “differing strengthsand non-overlapping weaknesses of quantita-tive methods (large sample size, trends, gen-eralization) with those of qualitative methods(small N, details, in depth)” (Creswell, 2007,p.63). Specifically, this research employed thevalidating quantitative model of the triangu-lation design as cited by Creswell. Themodel explains that while both quantitativeand qualitative data are collected simultane-ously and analyzed separately, the results ofthe qualitative data are used to interpret thequantitative results.

SAMPLE

In order to participate in the study,campers had to fall in the 13-17 age rangeand receive permission from their campdirector. Of the 120 camp attendees, 45were eligible for inclusion in the study and40 assented, resulting in a participation rateof 89%. Forty campers between the ages of13 and 17 enrolled in the project at CampFor All, 22 from Children’s Hospital at Scottand White (Temple, Texas) and 18 fromUniversity of Texas Medial Branch Children’sHospital (Galveston, Texas) (Table 1).

As Table 2 describes, the diagnosis distri-bution within the week was diverse. The

large range within the table demon-strates the myriad of concerns thatare utilized throughout the week;additionally, the campers are eachat varying stages of their illnessexperience. For example, of the 16 campers who have experiencedcancer, 2 were currently withintreatment protocol, 14 others wereoff treatment, and 2 of the campershad experienced recurrence.

DATA COLLECTION SEQUENCE

Data collection sequence fol-lowed three phases. Phase 1included baseline data collection of the hopefulness scale, a code ofconduct, the consent and assentforms, and a demographic form.Phase 2 began as camp ended (aftercampers had been introduced tothe technology but before curricu-lum implementation) and includedthe mid-point measurements of thehopefulness scale along with themid-point semi-structured inter-view. Phase 3 concluded the proj-

ect after the six weeks of curriculum withexit scales and an exit interview (Table 3).

QUANTITATIVE TOOL

The Hinds’ Hopefulness Scale forAdolescents was used to address the study’sfirst research goal, that the program, ZoraCamp4All, sustains the campers’ hopefulnessafter their week at camp. The HSA containsa 24-item 6-point Likert scale designed tomeasure the degree of positive future orienta-tion that an adolescent feels at the time ofthe measurement. This scale was chosenbecause it had been tested by Hinds and colleagues in diverse samples of adolescents,including those who are well, those who are

FOCUS SUMMER 2010



Figure 2. Pre-Built Gathering Hall in Zora Camp4All

Figure 3. Pre-Built Lake in Zora Camp4All

TABLE 1. HOSPITAL-GROUP DEMOGRAPHIC DISTRIBUTION

CAMP DREAMCATCHER N=22 RAINBOW CONNECTION N=18

Mean Age 14.6 15.4

Community Rural- area around Temple,TX Urban- area around Houston,TX

Gender 13 Females, 9 Males 10 Females, 8 Males

Diagnosis Distribution 9 siblings 9 siblings3 blood disorder 3 blood disorder

10 cancer 6 cancer

Ethnicity Distribution 16 European American 10 Hispanic American4 African American 6 African American

2 Hispanic American 2 European American

in residential treatment programs, and thoseexperiencing cancer (Hinds et al., 1999;Hinds et al., 2000). The internal consisten-cy estimates have ranged from .82 to .93,indicating moderately strong reliability (Hinds et al., 2000).

QUALITATIVE TOOLS

Semi-structured personal interviews wereconducted both at camp and upon returninghome. The interviews contained five itemsaddressing the youth’s attitude toward hope,five items addressing the youth’s attitudetoward social connectedness, and five itemsaddressing the youth’s attitude toward technol-ogy. Interviews were audio recorded and tran-scribed verbatim immediately after. Exit inter-views were conducted by telephone as Berg(2007) explains that telephone interviews are“quite productive when [ . . . ] the researcherhas already conducted face-to-face interviewsor [ . . . ] developed a rapport during field-work” (p. 108). The interviews were recordedand transcribed verbatim. Transcripts werecoded to identify recurrent themes.

All activity within the virtual world waslogged in order to maintain records of whatwas built and to ensure safety. An online logprovided opportunities for both qualitative(activities and coding of 3D creations) andquantitative data (e.g. log-on frequency andnumber of objects created). Logs were parsedto assess the number of objects, characters,and virtual spaces created as well as the number of on-line interactions that occurredduring the study. The observations of logsand objects aid in understanding how ZoraCamp4All sustains hopefulness.

DATA ANALYSIS

The HSA was measured independently for differences across data collection phasesemploying the Wilcoxon rank-sum test, used instead of Student’s t-test because normal distribution could not be assumed.According to Hinds & Gattuso (1991), theHinds’ Hopefulness Scale for Adolescentscan be completed in 4-9 minutes and scorescan range from 6-144, with higher scoresindicating higher levels of hopefulness.

The results of this scale were analyzed forrelationships with demographic variablessuch as diagnosis, as well as Zora Camp4Alllog data, including number of log-ins andnumber of curriculum objectives completed.

All qualitative data including interviewsand logs was analyzed using an ethnographicapproach aimed at gathering a rich set of datato construct an understanding of how ZoraCamp 4All assimilated into the pediatriccamping community. The logs of on-lineinteraction as well as the interviews werecoded for recurrent themes, including thosethat address hopefulness and the camper’sattitude toward the program. This processemployed Miles and Huberman’s (2001)method of using charts and matrices for within-case and across-case analysis. The finalsystem of charted codes was used to expandupon and embellish the quantitative data.

RESULTSThe results from this study are presented

in two sections. The first section addressesthe impact that the pediatric camping experi-ence had on the adolescents’ hopefulness.The second section describes the effect thatthe virtual camp, Zora Camp4All, had onthe campers once they returned home.

HOPEFULNESS AFTER CAMP FOR ALL

The baseline hopefulness scores within the participating campers indicate that thegroup, as a whole, came to camp with a highaverage level of hopefulness. Table 4 depictsthe varying scores of hopefulness within thegroup. Those campers with illnesses cameinto the camp experience with higher hope-fulness mean scores than the siblings. This is consistent with Cantrell and Lupinacci‘sfindings (2004) that adolescents who were illhad a significantly higher mean hopefulnessscore than healthy adolescents. Additionally,those who were new to Camp For All had ahigher mean than those who had been tocamp in the past.

As Table 4 describes, the mean scores ofhopefulness increase within each of the groups.Despite this increase, there is a large gap inscores between the two different hospitals.Camp Dreamcatcher, the group from theChildren’s Hospital at Scott and White inTemple, Texas, demonstrated a much highermean upon entrance into camp than theother hospital. Rainbow Connection fromthe University of Texas Medical Branch in

FOCUS SUMMER 2010

A PUBLICATION OF THE CHILD LIFE COUNCIL 5continued on Focus page 6

TABLE 2. DIAGNOSIS DISTRIBUTION

CATEGORY DIAGNOSIS N (%)

Oncology Stomach cancer 1 (2.5%)(n=16) ALL 7 (17.5%)

Testicular cancer 1 (2.5%)Langerhans cell histiocytosis 1 (2.5%)

Osteosarcoma 1 (2.5%)Brain tumor 2 (5%)Liver tumor 1 (2.5%)

Hodgkin’s lymphoma 1 (2.5%)Burkitt’s lymphoma 1 (2.5%)

Hematology Hemophilia 2 (5%)(n= 6) Sickle cell disease 4 (10%)

Sibling No diagnosis 16 (40%)(n=18) Asthma 2 (5%)

TABLE 3. DATA COLLECTION TIMELINE

MEASUREMENTS 6/30 6/31-7/3 7/3 7/4-10/1 10/1PHASE 1 PHASE 2 PHASE 3

Code of Conduct X

Assent X

Demographics X

Hopefulness Scale X Week at Camp X Curriculum from Home Xfor Adolescents

Interview X X

Zora Camp4All logs X

Galveston, Texas, had a mean that was 17.23points lower than Camp Dreamcatcher; thelarge standard deviation for RainbowConnection depicts the handful of scoreswithin the group that act as outliers. Threeindividuals from Rainbow Connection havescores below 70 points, the clinical level ofhopelessness (Hinds et al., 2000). RainbowConnection sees mostly minority familiesfrom lower SES neighborhoods.Unfortunately, most research on hopefulnessand hopelessness in youth has been conduct-ed on European American middle class fami-lies (Grant et al., 2003). A study by Landiset al. (2007) describes adolescent stress andhopelessness in urban settings; the study con-cludes that chronic, uncontrollable stressors

(poverty, community violence) were morehighly associated with hopelessness in thesample. Although the scope of this projectdoes not allow for further investigation, thislarge discrepancy provides opportunities forfuture research as it presents implications forthe development of interventions to hostmultiple chronic stressors, not only illness.

Though the gaps remain, the jump withinaverages suggests that the camp experiencedoes have a positive impact on the campers’sense of hopefulness. As Table 5 describes,the mean hopefulness increase was signifi-cantly greater than zero, providing evidencethat the camp experience is effective inenhancing hopefulness. When interviewed,the campers explained the various aspects ofcamp that they felt contributed to feelinghopeful. As Table 6 describes, campers were

split between the lasting impact of bothsocialization and activities. This insightinforms future research that the combinationof both could lead to greater participationwithin interventions meant to mirror thecamp experience.

HOPEFULNESS AFTER ZORA CAMP4ALL

This section addresses the research ques-tion: Does Zora Camp4All help to sustain thecampers’ sense of hopefulness after their week ofcamp? While the data suggests that campdoes have a positive impact on the adoles-cents’ sense of hopefulness, the ZoraCamp4All extension of the interventionattempts to produce similar results.

Two groups arose during the implementa-tion of the 6-week curriculum from home.The curriculum cohort (n=10) includescampers who consistently participated in theobjectives of the facilitated activities. Thenon-curriculum cohort (n=30) includescampers who chose to use Zora Camp4All as a vehicle for social connection and did notparticipate in the curriculum. Using thesenatural comparison groups, this section willexamine the results of the two groups.

As Table 7 conveys, not only was hopeful-ness maintained, but for some populations,the mean hopefulness score increased onceagain. The table describes that a decrease inhopefulness was observed in two samples, thenon-curriculum cohort and the entire CampDreamcatcher group. When looking closelyat the results of the two cohorts, it is impor-tant to note that the curriculum cohort had ahigh hopefulness mean at the beginning ofthe project. This distinction indicates thatthe program might have been more appeal-ing to individuals who already had a founda-tion of hopeful thinking patterns. Despitethis, the difference within the curriculumcohort between Time-2 and Time-3 still suggests a positive impact on the campers’hopefulness scores.

Table 8 illustrates that the mean hope-fulness increase for all campers is not significantly greater than zero, which doesnot support the hypothesis that the ZoraCamp4All program enhanced hopefulnesswithin the entire group. The mean hopeful-ness increase in the non-curriculum cohort is also not significantly greater than zero. The curriculum cohort also demonstrated no statistical significance as the mean hopefulness increase in the group is not

TABLE 4. HSA SCORES AFTER CAMP FOR ALL

SAMPLE N MEAN T-1 MEAN T-2 ∆(SD) (SD)

Campers 40 94.65 (15.98) 99.38 (16.07) 4.7 Campers with an Illness 22 96.04(14.73) 99.54(16.32) 3.5

Campers who are Well-Siblings 18 92.56 (17.99) 99.13(16.20) 6.6 Camp Dreamcatcher 22 101.54(9.86) 105.54(11.84) 4.0

Camp Rainbow Connection 18 84.31(18.03) 90.13(17.44) 5.8 Returning Campers 32 93.37(16.71) 98.80(16.53) 5.4 First Year Campers 8 101.25(11.97) 104.38(11.20) 3.1


FOCUS SUMMER 2010


TABLE 5. HSA SCORE CHANGES AFTER CAMP FOR ALL

SAMPLE MEAN ∆ SD T-TEST P VALUE 95% CI

All Campers (n=40) 4.73 5.31 5.63 <.0001 3.03-6.42

TABLE 6. ASPECTS OF CAMP THAT CONTRIBUTE TO HOPEFULNESS

SAMPLE CODING CODES FREQUENCY ILLUSTRATIVE QUOTECATEGORY

All campers Socialization Positivity 6/40 We encourage each other all the time like if someone (n=40) (n=22) needs help swimming then I encourage them and if

someone needs help with cancer I encourage them.

Friends 9/40 I like the people in my cabin and they are all pretty cool and they make me feel hope to be here.

Shared Illness 7/40 Just seeing how everyone is here and doing well enough Experience to come to camp is hopeful.

Recreation Challenges 7/40 You are challenged here and you do things that I never (n=18) thought I’d be able to do and that makes me feel like I

could do anything.

Activities 11/40 Well there’s the rock climbing and I love swimming and I like horseback riding. So [camp] lets you do lots of fun things.

significantly greater than zero. Thus, it cannot be suggested that Zora Camp4Allpromotes hopefulness. Despite this, thehopefulness scores were sustained and thethree-week drop that was cited by Hinds(1988) was not experienced. This suggeststhat Zora Camp4All might have a hand incontinuing the same hopeful atmospherewitnessed at Camp For All; although furtherinvestigation needs to confirm this finding.

Understanding that many factors con-tribute to feeling hopeful, data was analyzedfor correlations between change in hopeful-ness and activities within Zora Camp4All.As Table 9 describes, the data could not con-firm that the chosen elements of ZoraCamp4All contributed to the change inhopefulness scores. The most noteworthycorrelation was between the number of log-ins within the curriculum cohort and theincrease in hopefulness; nevertheless, it didnot reach statistical significance. However,given the small N, it would be unlikely tofind statistical significance. Additionally, thescope of this project did not allow for testingof further variables included within the ZoraCamp4All virtual community.

Both Phase 2 and Phase 3 interviews werecoded to derive an understanding of thecampers’ opinions on the impact of ZoraCamp4All on their hopefulness. Whenasked specifically about the programs’ ele-ments that contribute to hopefulness, thecampers indicated a mix between maintain-ing connections, telling stories, and partici-pating in activities (Table 10). During thecoding process, it was noted that the curricu-lum cohort identified telling stories to be thegreatest factor within Zora Camp4All con-tributing to hopefulness. Alternately, thenon-curriculum cohort who used ZoraCamp4All as a vehicle for staying in touchindicated that maintaining connections wasthe greatest contributing factor.

This segmentation within the results indi-cates that the curriculum encompassed inZora Camp4All may be more appealing toindividuals who value the story-telling aspectof the program. Alternately, those camperswhose main priority is maintaining connec-tions may be less inclined to participate fullyin the curriculum activities. For example,the participant who logged-in most frequent-ly yet never participated in curriculum orbuilt objects, indicated in his interview thefollowing:

I made lots of friends this week and Ithink Zora will be a way to you know, keepup with them because I don’t have likeMySpace or anything so this will be good.

CONCLUSIONSThis pilot study indicates that the pedi-

atric camping experience contributes toenhanced hopefulness for adolescents withchronic illnesses and their siblings. Likewise,the mean differences after using the virtualcamp, Zora Camp4All, indicate that thehopefulness gained at camp was sustained


FOCUS SUMMER 2010

continued on Focus page 8

TABLE 7. HSA SCORES AFTER ZORA CAMP4ALL

SAMPLE N MEAN T-1 MEAN T-2 MEAN T-3 ∆(SD) (SD) (SD) (T-3 – T-2)

All Campers 40 94.65 (15.98) 99.38 (16.07) 100.08(13.87) .70Non-Curriculum Cohort 30 94.03(17.16) 98.90(16.32) 98.77(15.20) -.13

Curriculum Cohort 10 98.50(11.12) 103.90(12.55) 104.00(8.15) .10Campers with an Illness 22 96.04(14.73) 99.54(16.32) 101.09(11.73) 1.55

Campers who are Well-Siblings 18 92.56 (17.99) 99.13(16.20) 99.25(13.27) .12Camp Dreamcatcher 22 101.54(9.86) 105.54(11.84) 105.00(10.83) -.54

Camp Rainbow Connection 18 84.31(18.03) 90.13(17.44) 93.13(15.20) 3.0

TABLE 8. DESCRIPTIVE STATISTICS OF HSA SCORES AFTER ZORA CAMP4ALL

SAMPLE MEAN ∆ +/-SD T-TEST P VALUE 95% CI

All Campers (n=40) .70 5.31 -.60 .55 -1.67-3.07 Non-Curriculum Cohort (n=30) .53 7.03 -.47 2.05 -1.72-2.77

Curriculum Cohort (n=10) .70 4.98 -.45 .67 2.85-4.25

TABLE 9. RELATIONSHIPS BETWEEN ZORA USAGE AND CHANGE IN HSA SCORES

ZORA VARIABLE CURRICULUM COHORT NON-CURRICULUM COHORT

Number of Log-Ins r=+ .39 r=+.27Number of Completed Curriculum Objectives r=-.17 r=.00Number of Objects Built r=-.03 r=+.01Number of Lines of Chat r=+.24 r=+.21Number of Stories Created r= +.10 r=-.12Average Time on Zora r=+.23 r=.09*correlations not statistically significant

TABLE 10. ASPECTS OF ZORA CAMP4ALL THAT PROMOTE HOPEFULNESS

SAMPLE CODING FREQUENCY ILLUSTRATIVE QUOTECATEGORY

Non-Curriculum Connection 25/30 People here are so positive so staying connected with them Cohort 83% will make me feel the same atmosphere of camp.(n=30)

Story-Telling 4/30 I think sharing memories from the week will help us feel hope.13%

Activities 2/30 I like working with computers and programming stuff so that 6% part of Zora will help me feel confident and positive and

I guess hopeful.

Curriculum Cohort Connection 1/10 All of my friends here are really hopeful so Zora(n=10) 10% can keep us together.

Story-Telling 7/10 Sharing camp memories is the most hopeful part because 70% we can remember times when we were really happy.

Activities 1/10 Building things that can help us in the future will remind us 10% of the encouragement at camp.

after six weeks of being home. However, itcannot be confirmed that the tested elementsof Zora Camp4All were contributing to asustained sense of hopefulness. Due to thesmall N, correlations could not be foundwithin the data indicating a connectionbetween the tested elements of ZoraCamp4All use and changes in hopefulness;additionally, the change in hopefulness afterusing Zora Camp4All was not statisticallysignificant. Further investigations should becompleted to confirm Zora Camp4All’sinvolvement in the sustainability.

This research does clarify that there aredifferent patterns of use based on differentdevelopmental needs. For example, thoseindividuals who wish to use Zora Camp4Allto maintain connections may be less inclinedto participate in the on-line curriculum.Other elements within Zora Camp4All, suchas chatting, could contribute to the campers’positive outlooks on the future. Thisresearch suggests that interventions shouldemploy not only virtual support groups andeducational curriculum but also time andmechanisms for socialization.

Finally, this pilot study highlights elementsthat are present in current research in thefield. The discrepancy between hospitalgroups confirms that additional chronicstressors such as low-income urban environ-ments must be taken into considerationwhen developing an intervention that hostsdiverse demographics. Secondly, the gapbetween those campers who are ill and theirsiblings verifies that the sibling experience isan arena for future research and interventionimplementation.

ACKNOWLEDGEMENTSWe thank Clement Chau, Laura Beals and

Keiko Satoh from the DevTech researchgroup at Tufts University as well as KurtPodeszwa and the staff at Camp For All. Wealso thank the National Science Foundationfor support of this research through an NSFCareer grant # IIS-0447166 and theDeborah Munroe Noonan MemorialResearch Fund. Any opinions, findings, andconclusions or recommendations expressedin this article are those of the authors and donot necessarily reflect the views of theNational Science Foundation.

REFERENCESBerg, B. (2007). Qualitative Research Methods for the SocialSciences, Sixth Edition. Boston: Allyn & Bacon.

Bers, M (2006).The role of new technologies to foster positive youth development. Applied Developmental Science,10(4), 200-219.

Bers, M. (2009). New media for new organs: A virtual com-munity for pediatric post-transplant patients. Convergence:The Journal of Research into New Media Technologies, 15(4),462-469.

Bers, M., Beals, L., Chau, C., Satoh, K., Blume, B., DeMaso, D., &Gonzalez-Heydrich, J. (2010). Use of a virtual community as apsychosocial support system in pediatric transplantation.Pediatric Transplantation, 14, 261-267.

Bers, M., Chau, C., Satoh, K., & Beals, L. (2007).Virtual communities of care: Online peer networks with post-organtransplant youth. Proceedings of the 2007 ComputerSupported Collaborative Learning Conference,New Brunswick, NJ.

Bers, M, Gonzalez-Heydrich, J., & DeMaso, D. (2001). Identityconstruction environments: Supporting a virtual therapeuticcommunity of pediatric patients undergoing dialysis. InProceedings of Computer-Human Interaction (CHI’01) ACM, 380-387.

Briery, B., & Rabian, B. (1999). Psychosocial changes associated with participation in a pediatric summer camp.Journal of Pediatric Psychology, 24, 183-190.

Cantrell, M., & Conte,T. (2008). Enhancing hope among early female survivors of childhood cancer via the internet.Cancer Nursing, 31(5), 370-379.

Cantrell, M., & Lupinacci, P. (2004). A predictive model ofhopefulness for adolescents. Journal of Adolescent Health,35, 478-485.

Creswell, J. (2007). Qualitative Inquiry & Research Design:Choosing Among Five Approaches. Newbury Park, CA: Sage.

Donath, J. (1996). Inhabiting the virtual city: The design ofsocial environments for electronic communities.(Doctoral dissertation). MIT, Cambridge, MA.

Erikson, E. (1982). The life cycle completed. New York:W.W.Norton.

Ferran, C.J.,Wilken C.S., & Popovich, J.M.(1992).Clinical assess-ment of hope. Issues in Mental Health Nursing, 13, 129-138.

Grant,K., Compas, B., Stuhlmacher, A.Thurm, A., McMalhom,S., & Halpert, J. (2003). Stress and developmental psy-chopathology: Moving from markers to mechanisms of risk.Psychological Bulletin, 129, 447-466.

Herth, K. A. (1993a). Hope in older adults in community andinstitutional settings. Issues in Mental Health Nursing, 14,139-156.

Herth, K. A. (1993b). Hope in the family caregiver of termi-nally ill people. Journal of Advanced Nursing, 18, 538-548.

Herth, K. A. (1990). Fostering hope in terminally ill people.Journal of Advanced Nursing, 15, 1250-1259.

Herth, K. A. (2001). Development and implementation of ahope intervention program. Oncology Nursing Forum 28(6),336-340.

Hinds, P. S. (1988). Adolescent hopefulness in illness andhealth. Advances in Nursing Science, 10, 79-88.

Hinds, P. S., (2004).The hopes and wishes of adolescentswith cancer and the nursing care that helps. OncologyNursing Forum, 31, 927-934.

Hinds, P. S., & Gattuso, J. (1991). Measuring hopefulness inadolescents. Journal of Pediatric Oncology Nursing, 8(2), 92-94.

Hinds, P. S., & Martin, J. (1988). Hopefulness and the self-sustaining process in adolescents with cancer.Nursing Research, 37(6), 336-340.

Hinds, P. S., Quargnenti, A., Bush, A., Pratt, C., Fairclough, D.,& Rissmiller, G. (2000). Efficacy of self-care coping interven-tions with adolescents newly diagnosed with cancer.European Journal of Oncology Nursing, 4, 6-17.

Hinds, P. S., Quargnenti, A., Fairclough, D., Bush, A., Betcher,D., & Rissmiller, G. (1999). Hopefulness and its characteristicsin adolescents with cancer. Western Journal of NursingResearch, 21, 600-620.

Koopmeiners, L., Post-White, J., Gutknecht, S., Ceronsky, C.,Nickelson, K., Drew, D., Mackey, K.W., & Kreitzer, M. J. (1997).How health care professionals contribute to hope in patientswith cancer. Oncology Nursing Forum, 24, 1507-1514.

Korner, J. N. (1970). Hope as a method of coping. Journal ofConsulting and Clinical Psychology, 34(2) 134-139.

Lanin-Kettering, I. (2009).Through sibling eyes:The impact ofa sibling support intervention. http://www.supersibs.org/.

Landis, D., Gaylord-Harden, N., Malinowski, S., Grant, K.,Carleton, R., & Ford, R. (2007). Urban adolescent stress andhopelessness, Journal of Adolescence, 30, 1051-1070.

Lazarus, R. & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.

Miles, M.B., & Huberman, A.M. (2001). Qualitative DataAnalysis: An Expanded Sourcebook (2nd ed.). Newbury Park,CA: Sage.

Ritchie, M.A. (2001). Self-esteem and hopefulness in adoles-cents with cancer. Journal of Pediatric Nursing, 16, 35-41.

Snyder, C. R. (2000). Genesis:The birth and growth of hope.In C.R. Snyder’s (ed.) Handbook of hope:Theory, measures,and applications (pp. 25-38). San Diego, CA: Academic Press.

Snyder, C. R., Lopez, S. (2003). Positive psychological assessment : a handbook of models and measures.Washington, DC : American Psychological Association.

Stawski, M., Auerbach, J. G., Barasch, M., Lerner,Y., & Zimin, R.(1997). Behavioural problems of children with chronic physi-cal illness and their siblings. European Child and AdolescentPsychiatry, 6, 20-25.

Taylor, J. D. (2000). Confronting breast cancer: Hopes forhealth. In C. R. Snyder’s (ed.) Handbook of hope: Theory,measures, and applications, (pp. 355-369). San Diego, CA:Academic Press.

Turuk, S., Kukunyei, G., Karolyi, L., Ittzes, A.,& Tomcsanyi,T.(2006). Outcome effectiveness of therapeutic recreationcamping program for adolescents living with cancer anddiabetes. Journal of Adolescent Health, 39, 445-447.


FOCUS SUMMER 2010


inpatient settings. The specialists have adapt-ed the materials for individual children andfacilitated discussion on key asthma concepts.Online resources were provided which couldbe utilized for reinforcement once the childwas discharged home.

The integration of child life specialists intohealthcare education is not a new concept, butit is an important one that has not yet fullygained widespread acceptance. Child life specialists have specialized training in childdevelopment and communication techniquesintended to engage and calm children, even instressful situations. The American Academy ofPediatrics supports child life services as theyfocus on each child’s strengths to open thelines of communication and present informa-tion related to each child’s medical concerns(American Academy of Pediatrics Committeeon Hospital Care, 2006).

In this project the child life team made

three major contributions: (1) they helpedchildren feel safe and more relaxed in anunfamiliar and potentially frightening situa-tion, (2) they presented essential asthmainformation in a concise, easy to understandmanner, and (3) they encouraged more effec-tive patient communication with physiciansand other healthcare providers. It is our beliefthat, through this effort of providing individ-ualized patient support and education, wecan enable the child to obtain a sense of con-trol over their diagnosis. We hope that thiswill empower children with asthma and theirfamilies with a greater comfort level, whichwill encourage communication with theirhealthcare providers regarding their asthmamanagement plan, therefore preventing addi-tional ED or hospital visits in the future.

Our project was approved by theInstitutional Review Board of WinthropUniversity Hospital. Participants were recruit-

ed from a population of children ages 6 to 18years of age who were admitted to either ouremergency department or inpatient servicewith asthma symptoms. The pilot group consisted of 29 children who received theintervention and who will be followed forone year. Initial analysis shows that 57% ofsubjects younger than 12 years and 85 % of those 12 years and older had disease symptoms which were not controlled whenassessed by the standardized Asthma ControlTest. In all five subjects who have completedthe 6-month follow up questionnaire, therewas an improvement in the score.

Follow-up data will continue to be collect-ed until participants have completed the oneyear post-encounter period. This pilot studyis an encouraging experience supporting thebenefits of incorporating child life specialistsinto the team of healthcare educators.

REFERENCEAmerican Academy of Pediatrics Committee onHospital Care (2006). Child Life Services. Pediatrics,118, 1757-1763.

H is for Healthcare Educatorscontinued from page 1



the anxiety of children who were or were notaccompanied by their parents during induc-tion; however, there were some notableexceptions. Patel, Schieble, and Davidson’sstudy (as cited in Chundamala, Wright, &Kemp, 2009) found parental presence plusvideo games statistically significant in mini-mizing children’s anxiety compared toparental presence alone. In Kain, Caldwell-Andrews, Maranets, Nelson, & Mayes’ study(as cited in Chundamala, Wright, & Kemp,2009), anxious children accompanied by calmparents displayed significantly less anxietythan anxious children with no parents present.Conversely, calm children accompanied byanxious parents exhibited significantly greateranxiety than calm children with no parentspresent. No significant differences wereapparent when both children and parentswere calm or when both were anxious.

Most studies that investigated both parentand child anxiety found mixed results.

Parent anxiety was significantly less in one study for the parental presence plusmidazolam group, while these same two factors reduce child anxiety in another study.Finally, three studies illustrated no significantdifferences between groups. When consider-ing the evidence from all studies, the majori-

ty of studies showed no differences in anxietybetween parental presence and no parental presence.

In this review, limitations in the studieswere evident. As the authors noted, manystudies did not have enough power on whichto base their results. Randomization wasineffective in many studies, which allows for the possibility of bias. Nearly half wereconducted at the same hospital, all of whichhad the same principal investigator, poten-tially skewing the evidence. Additionally,some participants and researchers overlappedamongst these studies. Using a more robust,meta-analysis evaluation was not feasible dueto multiple types of anxiety measures anddifferent points in time when anxiety wasassessed across studies. Although this subjectmatter does not allow for a double-blindstudy design, the lack of double blindingincreased the possibility of bias in the studyresults. Finally, the evidence scale used bythe authors to evaluate these studies was notidentified; therefore, the authors’ ratings ofthe studies cannot be evaluated.

Further research may enhance knowledgeabout the factors that affect anxiety during

Parental Presence for Anesthesia Induction: Is It Best Practice?Continued from page 2

continued on page 8

In this review, limitations

in the studies were evident.

As the authors noted, many

studies did not have enough

power on which to base

their results. Randomization

was ineffective in many

studies, which allows for

the possibility of bias.

anesthesia induction and the effectiveness ofparental presence. Investigation of factorssuch as parental behavior during induction,and the interplay between parent and childanxiety during induction, may clarify theconditions under which parental presence is beneficial. Lastly, a study amalgamatingpreoperative teaching programs and parentalpresence would be enlightening. The combi-nation may decrease parent and child anxietyand enhance parents’ understanding of theirroles when supporting their children throughinduction. Thus, coupling preparation andparental presence may result in more positiveoutcomes.

According to this review, the evidencedoes not currently support parental presenceas an intervention in clinical practice todecrease anxiety during induction. Theresults, however, do show that parental presence is not detrimental in most situa-tions and may help in some. For example,encouraging calm parents to escort anxious

children, but discouraging anxious parentsfrom accompanying calm children may begood choices to consider with appropriateassessments and preparation for the parents.Institutions’ decisions whether or not to offerparental presence reach beyond the effective-ness of the practice as an intervention toreduce anxiety. Parents may expect this

option, and it can impact customer satisfaction and parental perception of apatient- and family-centered approach.Given that clinical practice balances andintegrates the best available research evi-dence, clinical expertise, and the patient/family values, healthcare professionals must consider parent and child preferences.Using the literature to develop guidelines to help staff and families determine whichchildren and parents may benefit fromparental presence, and which may not, may be appropriate.

Currently, many child life specialists routinely advocate for parental presence,believing it is effective in nearly all situations,but the literature suggests that separationmay not intimidate some children, and children with anxious parents may copemore effectively without parental presenceduring induction. Child life specialists musthave heightened awareness of cases whererisks of elevated anxiety are possible and planaccordingly. Before advocating for parentalpresence, child life specialists must knowwhat the evidence supports and integrate this knowledge into their assessments andpractice.

Parental PresenceContinued from page 7



NOVEMBER 2010 EXAM ADMINISTRATIONCLC has recently partnered with a new test administration agency, SchroederMeasurement Technologies (SMT) and is pleased to announce that the November2010 administration of the Child Life Professional Certification Exam will beoffered via computer-based test administration (CBT) through SMT’s network of over 300 testing centers worldwide.

The application process has not changed. Applications for the fall exam are dueby August 31, 2010 for anyone educated within the US or Canada, and by June30, 2010 for those educated outside the US and Canada. Once an exam applicanthas established eligibility, candidates will contact SMT to schedule their assess-ment at a convenient testing center between November 6th and November 19th.

The spring exam will continue to be offered in one location as a paper and pencilexam only at the site of the CLC Annual Conference on Professional Issues.

To offset the increased costs associated with offering CBT, candidates will pay anadditional CBT fee of $75 for the fall exam administrations. For many candidates,the increase in exam locations will reduce the need for travel-related expenses,and for most, this will more than compensate for the additional fee.

More details will be forthcoming through the CLC website.

RECERTIFICATIONFor Certified Child Life Specialists whose certification cycle will expire onDecember 31, 2010, applications to recertify through Professional DevelopmentHours were due on June 30, 2010. Applicants will be notified if more information is needed or if their application has been randomly selected for audit. After theapplications have been reviewed and the audit is complete, applicants whoseapplications have been accepted will receive new certificates by mail late in the summer.

If you have not submitted an application to recertify by PDH and your 5-year certification cycle will expire on December 31, 2010, you can still recertifythrough PDHs. CLC will accept late submissions through the end of October.Candidates who apply for recertification between June 30th and October 31st are required to pay a $50 late fee and submit all supporting documentation (i.e. certificates of attendance) of the PDHs submitted. Late applications cannotbe completed online.

Recertification candidates may also recertify by taking and passing the November2010 Certification Exam.

Please contact Ame Enright, Manager of Certification, at [email protected] any certification related questions.

CERTIFICATION CORNER

According to this review, the

evidence does not currently

support parental presence as

an intervention in clinical

practice to decrease anxiety

during induction. The results,

however, do show that

parental presence is not

detrimental in most situations

and may help in some.

B. Models exemplary practice of child lifethrough critical thinking, inquiry, evaluation, and a commitment to continuous improvement

Bindy worked with a medical student todevelop a parent questionnaire to evaluate afamily’s beliefs about access to play and thevalue of hospital play provided through theBCCH Child Life Department. Since then,the child life team has received requests frommedical students to speak annually at theirPediatric Professional Days. Bindy also demon-strates modeling exemplary practice throughher participation and thought-provokingcomments on the CLC forum, which stimulates discussion and promotes reflectivethinking.

C. Demonstrates advanced competencies andan ability to provide effective interventionsin a variety of situations

Bindy demonstrates advanced competen-cies every day in her clinical work. Herbeliefs in family-centered practice and collab-oration guide her work. One example waswhen she worked with a family whose childhad a cardiac arrest and needed emergencyassistance. Bindy kept the family’s needs andwishes at the forefront of her interaction.

Her advanced competencies were also par-ticularly evident when Bindy was supervisinginterns. Bindy was a mentor and coach tostudents, and under her supervision, manywent on to become excellent clinicians.

D. Models child life practice and team behaviors that acknowledge and respect the diversity of patients/families and members of the healthcare team

Bindy completed thoughtful assessmentsthat were the basis of her therapeutic interventions. These assessments alwaysincorporated cultural and diversity issues.

For example, Bindy worked extensivelywith a family from a very small, northernFirst Nations community. To help combatthe distance and separation they were experi-encing being away from their large close-knitfamily, Bindy set up one of our very firstvideo links. This was at a time when thistype of technology was not prevalent;

however Bindy was committed to supportingthe family in the way that was most importantto them.

E. Demonstrates strong professionalism andvalues driven interactions that includeclear, caring-boundaried, and professionalrelationships with patients and families

Bindy has been a role model for others in maintaining professional boundaries,while still developing close, therapeutic relationships with patients and families.According to one family, whose child has acardiac condition and with whom Bindy hasworked extensively, “Bindy has been there for us throughout Johnny’s* many stays atBCCH, whether it be open heart surgery, aheart cath, or just a patient visit since hisbirth 12 years ago… He has never beenafraid of coming to BCCH no matter whathas to be done.”

F. Exercises sensitivity to the individualpatient’s/family’s circumstances and providessupporting and nurturing care

Bindy has worked with children andyouth with cardiac conditions for much ofher 22 year career. As such, she often workswith highly anxious, complex patients andtheir families. There is seldom a time when a family who returns to the hospital, even fora short visit, does not stop by the child lifeoffice to look for Bindy – most times, it is to say a very heartfelt “thank you.”

G. Embraces and models the core concepts offamily-centered care including informationsharing to support patient/family participa-tion, collaboration and involvement intheir care

Bindy has been the recipient of twoFamily Centred-Care (FCC) Awards. Theseare awarded on the premise “that the bestcare for children happens when hospital staffand families work in partnership followingthe principles of FCC.” In one of Bindy’snominations, the family stated, “She wasthere when Ricardo* had his pacemakerplaced at 7 years of age. I was planning to go into the OR with him until he was putunder but I was not sure they would allowthis, so she was there as a backup at Ricardo’srequest…Her sense of humour and ability toread families has made BCCH a fun placefor Ricardo rather than the scary place somany children see.”

H. Participates in the development and incorporation of evidenced-based practice

In 2005 and 2006, Bindy was a CLCBoard member (member-at-large) and servedas the liaison for the Evidence-Based Practice(EBP) Committee. In this role, Bindy wasinstrumental in initiating a contract for thedevelopment of our current EBP documents.As a strong believer in EBP, Bindy incorpo-rates this commitment into her day-to-daypractice, ensuring that any information thedepartment distributes, for example, ourStudent Internship Manual, is evidence-based and appropriately referenced.

I. Mentors new child life specialists and students in developing child life competencies and supporting the effectivetransition to professional practice

The first introduction many of our internsreceive to the profession of child life isthrough the course Bindy teaches, Child LifePractice in Hospitals and CommunitySettings. Bindy provides “real life” child lifetraining, using creative presentation skills tointroduce the child life core competencies.As one of Bindy’s former students comment-ed, “she leaves us mesmerized!” Bindy’s students maintain strong ties with her, oftenseeking professional advice on practice issues.

J. Actively participates as a member of theChild Life Council

Since becoming a member of CLC in 1988, Bindy has held the following positions: Certification Chair, BoardMember-at-Large, Chair/Co-Chair ofProfessional Resources Committee, andMember of Education & TrainingCommittee and Program ReviewCommittee. Bindy has also presented at numerous CLC conferences, been a contributing author and/or reviewer ofnumerous CLC publications including the 2009 Focus article on Advocacy.

The words of these endorsers echo thesentiments of Bindy’s colleagues, students,patients, and families; they respect her as an exceptional child life specialist, educator,presenter, mentor, advocate, trainer, author,and facilitator. Bindy has demonstrated herdedication to the child life profession and is known for maintaining only the higheststandard possible. CLC proudly awardsBindy Sweett, CCLS with the inauguralMary Barkey Clinical Excellence Award.

Bindy SweettContinued from page 1



*Patient name has been changed for confidentiality

ensured props were cleaned between patients,and clowned outside of the windowed doorof isolated patients.

DEVELOP RESOURCES

The Child Life Department worked withNursing and Infection Prevention andControl to create new resources inresponse to the H1N1 outbreak.Together we developed recommen-dations for unsupervised ward play-rooms and waiting rooms inChildren’s Hospital. Child life spe-cialists also developed a specific tipssheet for the Winnipeg RegionalHealth Authority to help childrencope with getting an H1N1 immu-nization shot (Table A). Whereverwe made a change in practice, weincorporated the change into ourchild life departmental documents.

POINT OF VIEW FROMCHILDREN’S HOSPITALADMINISTRATION

Susan Fogg, Program Director of Child Health Public Services,acknowledged the contribution thatchild life made during the crisis:“Our experience with the H1N1 pandemic was intense. There weremany unknowns. Throughout Juneand July 2009 our Children’s Hospitalwas challenged to meet the needs ofour population and we were glad tosee phase one subside. All of our staffwent above and beyond the call ofduty to care for the many infants,children and youth who experiencedsevere H1N1 illness, and all those whopresented to our EmergencyDepartment for assessment and care.On behalf of the Child HealthProgram, I would like to thank ourchild life specialists for their uniquecontribution to our community duringthis worldwide event. They are highlyvalued members of our health careteam.”

SUMMARYOverall, the experience with

H1N1 challenged us all. We learned

that we could improve our infection controlpractices, and that some were no longeracceptable. We explored and developed alter-native modes of practice that would still meetour goals of providing for children and fami-lies. We partnered with the healthcare teamto ensure we were supporting each other andcontinuing to meet the needs of children andfamilies (for example, we couldn’t just ask awaiting room to remove all their toys withoutproviding alternatives such as giveaways,movies to watch, and storytimes). We also

learned that families were willing to supportmeasures that increased their safety, and thatthese measures increased their confidence inus. We learned that child life could work col-laboratively with other disciplines to address apandemic in a timely, flexible and adaptivemanner. The H1N1 pandemic taught us alla lot, including that pulling together as ateam works!



Child Life During H1N1Continued from page 6

TABLE A: TIP SHEET CREATED FOR THE WINNIPEG REGIONAL HEALTH AUTHORITY,CANADA DURING THE H1N1 OUTBREAK N SPRING 2009

Going for a needle may be frightening or difficult for your child. Here are some tips that you can use to help your child in this situation.

• Tell your child about the procedure ahead of time, depending on your child and their age. Some suggestions are:Toddlers: at the time of the procedurePreschoolers: a few hours before the procedureSchool-age: 1 – 3 days before the procedureAdolescents: 1 – 2 weeks before the procedure, or as soon as you find out about it

• Prepare yourself. If you feel calm and relaxed, your child will sense this and act the same way.

• Take a familiar toy, teddy bear or blanket with your child - it provides comfort for your child.

• Reassure your child. Make sure your child knows going for a needle is not a punishment and that they did not do anything wrong.

• Tell the child they are getting the medicine to keep them healthy and safe, and it must go into their arm because it is notthe kind you can eat or drink.

• Be honest with your child that it may hurt.

• Use gentle and simple language that your child will understand without being scary. For example,“You may feel a quick pinchwhen they put the medicine in your arm. Afterwards, your arm may feel a little tired or sore.”

• If you are taking more than one child, have the child who is calmer go first as they will set example for the younger or more fearful child.

DURING THE PROCEDURE:• During the procedure, try to find positions of comfort and support for your child to help them stay still, such as the “hug hold” –

child sitting on your lap facing you or sideways while you restrain the child with a comforting hug.

• When possible, give your child choices, e.g. choosing which arm to have the needle in. Having some control helps.Give your child a time limit during which to make that choice. Other choice examples are: to look or look away;to sing a song or count while it is happening; to choose a particular bandage design/colour afterwards (if offered),which candy or sticker reward (if offered) they would like.

• Give your child the job of holding still during the procedure. If they have brought a stuffed animal, they can hold still with them.

• Offer distraction during the procedure, such as singing a song, blowing up an imaginary balloon, counting til it’s over, etc.You could offer sensory distraction by rubbing the other arm during the procedure. The child can also “blow the pain away”after the procedure.

ALWAYS:• Listen to your child’s concerns. It is okay for your child to ask questions, cry or talk about his/her feelings.

Crying helps get rid of tension, anger and hurt. Crying is healthy.

• Praise your child!

Some distractions waiting rooms could provide while the child is waiting:

• Television – movies or cartoons

• Colouring sheets, mazes and individual crayons (to keep due to infection control)

• Word Searches for older children – can download from sites such as:http://www.abcteach.com/directory/fun_activities/word_searches/

*PLEASE SEE THE LIST OF SUGGESTED COPING TECHNIQUES FOR DIFFERENT AGES ON THE REVERSE

Child Life Department, Children’s Hospital, Health Sciences Centre, Winnipeg

CLC Launched CLC Community, the newprofessional networking site, in June, shortlybefore the Annual Conference in Phoenix.During the opening session at conference,then-CLC president Ellen Good asked for ashow of hands of how many people hadalready logged on to view the new site. Aremarkable number of attendees raised theirhands, demonstrating just how popular CLCCommunity is becoming! Nearly 2,000 CLCmembers have already checked out the newsite; if you are not among these, we encour-age you to log in and experience for yourselfwhat all the buzz is about! Below are someof the new capabilities of CLC Community,and how it can benefit you as a CLC member:

Forums—while the forums are not new,improved system capabilities make it easierto manage your own subscriptions, setvacation settings, and attach files to yourmessages. An enhanced search featureallows you to quickly access and reviewolder discussion threads on popular topicsthat frequently appear on the Forum.

Blogs—a new way for members to commu-nicate! All members now have the abilityto create their own blog, and share theirthoughts and opinions based on their ownprofessional or personal experiences. Manymembers have already started a blog, andseveral have already posted several install-

ments. Be sure to check the blogsection so you don’t miss out!

File Sharing— this tool empowersall members to contribute to thecollective knowledge of the childlife community, by allowing themto store and share valuableresources in an online library.A robust search function meansthat all uploaded documents areeasily accessible to other memberslooking for information on a par-ticular topic. Examples of filesthat have already been uploadedinclude a sample VCUG prepbook, injection tips for caregivers,a Spanish patient checklist, andmore. We encourage you to checkin often and look for updates fromyour colleagues, then considercontributing a file or two yourself!

Member Profiles—every memberhas the chance to create theirown My Page, with a profile pic-ture, contact information, professionalinterests, a biography, and more. You canalso add links to outside content such asyour LinkedIn or Facebook profiles, yourTwitter page, blogs from sites likeWordpress, or photo slideshows fromFlickr and Picasa, just to name a few.

We hope that this is a member resourcethat will encourage our child life communityto collaborate on projects, share resources,and communicate better with each other!If you have any questions about how to navigate CLC Community, please email:[email protected].



Have You logged on to CLC Community?

social worker to compile information abouteach school-age patient’s reason for hospitaliza-tion or diagnosis, goals achieved in therapies,and possible challenges upon return to school.Each therapist on the team contributes dataabout the patient’s progress and relevant schoolrecommendations by writing notes in a sharedbinder that I created as a unified gatheringplace for team members’ information. Usingthis valuable resource of combined reportsfrom all of my team members, I am able tocreate a developmentally appropriatePowerPoint presentation geared toward thepatient’s classmates. In addition to text, I adddigital images to give a more visual explanationfor the students and to provide a clearer view

of the patient’s hospital experience. If thepatient’s address falls within our approved zipcode range, our school teacher, social worker,and I make a personal presentation to theclassroom. If patients are willing and able,they may also accompany us to their schools.

Although our school reentry process at St. Louis Children’s Hospital is certainly notflawless, it has allowed us the chance to fur-ther explore the needs of our Neuro Rehabpatients and their families. Developing a successful school reentry program, particular-ly for patients who have experienced signifi-cant physical, cognitive, and social changes, isessential to improve family-centered care inpediatric hospitals. As child life specialists,we have the tools and skills to assist ourpatients in transitioning back into the schoolenvironment. Our knowledge of develop-

mentally appropriate preparation and educa-tion can help us create an engaging andunderstandable presentation. However, it isthe collaboration with other disciplines andimplementation of all possible hospitalresources that allow us to achieve significantsuccess in the often-neglected field of schoolreentry.

REFERENCESDeidrick, K. & Farmer, J. (2005). School reentry

following traumatic brain injury. Preventing School Failure, 49, 23-34.

Kliebenstein, M.A. & Broome, M.E. (2000). School reentry for the child with chronic illness: parentand school personnel perceptions. PediatricNursing, 26(6), 579-582.

School ReentryContinued from page 5


CLC CalendarJULY

15 Deadline for Bulletin and Focus articles for Fall 10 issue

30 Deadline for abstract proposals for the 29th Annual Conference on Professional Issues

AUGUST31 Deadline for applications for the November administration of the Child Life Professional Certification Exam

for those educated within the U.S. or Canada

SEPTEMBER17-19 CLC Conference Planning Meeting

OCTOBER15 Deadline for written requests to withdraw from November Administration of the Child Life Professional

Certification Exam

NOVEMBER6-19 Child Life Professional Certification Exam Administration testing window

12-13 CLC Executive Board of Directors Meeting

11821 Parklawn Drive, Suite 310Rockville, MD 20852-2539

ELECTRONIC SERVICE REQUESTED

FSC LOGO HERE ☛

VISIT THE CHILD LIFEMARKETPLACE

If you haven’t had the opportunity tovisit the Child Life Marketplace, youcould be missing out! The directory provides convenient access to contactinformation from a growing number oforganizations that work with the childlife community, and some vendors arealso offering discounts and special offersexclusive to CLC members. If you haveworked with one of the businesses ornonprofit organizations listed in theMarketplace, consider sharing your experiences with your colleagues by rating and commenting on a listing.Be sure to visit regularly to check outwhat’s new on the site!

bindy sweett honored as 2010 mary ... - tufts university · nicole almeida, ms, ccls, winthrop...

Documents