The Role of the Certified Child Life Specialist with Adolescent and

the Journal of Child Life: PSYCHOSOCIAL THEORY AND PRACTICE

MARCH 2020

VOLUME 1

NUMBER 1

Brittany M. Wittenberg, PhD, CCLS, CFLE: [email protected]

e Role of the Certiﬁed Child Life Specialist

with Adolescent and Young Adult Patients

in Japanese Hospitals

Brittany M. Wittenberg, PhD, CCLS, CFLE

LOUISIANA STATE UNIVERSITY

Yukari Stickley, MS, CCLS

MISSOURI STATE UNIVERSITY

ABSTRACT

A child life specialist is the health care professional dedicated to providing psychosocial

interventions for adolescent and young adult (AYA) patients. e purpose of this explor-

atory study was to understand the role of the child life specialist in providing psychoso-

cial interventions for AYA patients in Japanese hospitals. Participants (n = 5) consisted

of Japanese child life specialists who were clinically trained in North America and work

in Japan. Participants completed a 30-minute online survey created specically for this

study. Child life specialists most frequently reported providing developmentally appropri-

ate play, emotional support, and family/sibling support for AYA patients in Japan. Child

life specialists encountered several challenges to providing interventions for AYA pa-

tients in Japan, including the promotion of emotional expression, lack of developmen-

tally appropriate resources, and low child life prioritization due to the limited number

of child life specialists in Japan. Future research is needed to understand the full scope

of psychosocial interventions provided for AYA patients in Japan by child life specialists.

Keywords: child life specialist, Japan, adolescent, young adult, psychosocial intervention

It is well known that adolescent and young adult

(AYA) patients need psychosocial support in the hos-

pital due to their unique developmental level (Car-

ter, 2014; Gusella et al., 1998; Kirchenbauer, 2013).

In a growing number of countries, a Certied Child

Life Specialist is the health care professional dedicat-

ed to providing psychosocial interventions and sup-

port to youth (Association of Child Life Professionals

[ACLP], 2018c). Several studies have explored the

psychosocial interventions provided by child life spe-

cialists for the AYA patient population in the hospital

setting in the United States (e.g., Carter, 2014, and

Kirchenbauer, 2013); however, there is a dearth of

research on the psychosocial interventions provided

for the AYA patient population in countries outside

of the United States, specically Japan (Carter, 2014;

Hagiwara, 2015; Ishizuka, 2017; Nishimoto, 2012).

Due to cultural dierences, psychosocial interven-

tions for the AYA patient population may vary based

on the country of origin. As part of their core values,

the child life specialist must consider the cultural up-

bringing of the patients and families to whom they

provide psychosocial interventions (ACLP, 2018c).

erefore, the purpose of this exploratory study was

to better understand the role of child life specialists in

providing psychosocial interventions for AYA patients

in Japanese hospitals. First, the history and profession-

al role of the child life specialist will be discussed, fol-

lowed by the characteristics of pediatric hospitalization

in Japan. Next, typical psychosocial development for

adolescents and young adults will be covered. en,

psychosocial interventions provided by child life spe-

cialists for AYA patients in North America and Japan

will be reviewed before discussing the current study.

Child Life Specialists in Japanese Hospitals

History and Professional Role of

the Child Life Specialist

e underpinnings of the child life profession be-

gan in the 1920s when several pediatric hospitals in

the United States created play programs for children

(Turner & Grissim, 2014). In 1955, Emma Plank,

who was a leading authority on the psychosocial care

of children in hospitals, created an educational sup-

port program for children in the Cleveland City Hos-

pital, which led to the development of the child life

profession (ACLP, 2018a; Rubin, 2014). e Child

Life Council was formed in the United States in 1982

and was later renamed the Association of Child Life

Professionals (ACLP, 2018a). Currently, there are

5,908 Certied Child Life Specialists in the United

States, 337 in Canada, 54 in Japan, and 69 in various

countries throughout the world (Child Life Certica-

tion Commission, electronic communication, May 1,

2019). In fact, the American Academy of Pediatrics

Committee on Hospital Care and Child Life Council

(2014) published a policy statement in which child

life specialists are considered the standard of care in

pediatric hospitals.

In Japan, the child life profession has developed as

an allied health profession. In 1999, the rst Certi-

ed Child Life Specialist started to work in a Japanese

hospital (Japanese Association of Certied Child Life

Specialists [JACCLS], 2018). By 2000, the JACCLS

was established in relationship with the ACLP in the

United States (ACLP, 2018b; JACCLS, 2018). Cur-

rently, there are 42 Japanese Certied Child Life Spe-

cialists registered with JACCLS and working in 31

hospitals in Japan (JACCLS, 2018).

A child life specialist is an expert in supporting chil-

dren and their families during challenging experiences

related to illness, injury, trauma, and hospitalization

(Gaynard et al., 1998). A child life specialist provides

psychosocial interventions to reduce fear and anxiety

for children and their family members in health care

settings; these interventions include emotional sup-

port, coping techniques, preparation for health care

procedures, developmentally appropriate and thera-

peutic play, bereavement care, sibling and family sup-

port, and developmentally appropriate diagnosis edu-

cation (Gaynard et al., 1998). e child life specialist

role is to help improve the socioemotional experiences

of children, adolescents, young adults, and their fami-

lies in the medical environment (ACLP, 2018c).

Characteristics of Pediatric Hospitalization

in Japan

e Japanese culture consists of a high-context com-

munication style, dened as a communication style

in which the nonverbal behavior is richer than what

is expressed verbally (Hall, 1989). Japanese culture

is modest, in that people do not show negative fa-

cial expressions directly (Nishimura et al., 2008).

During conversations, Japanese people understand

experiences, common sense, and values without hear-

ing about them (Hall, 1989). In addition, Japanese

people demonstrate a cultural sympathy, where they

perceive an individual’s feelings inseparably from oth-

ers because of their modest culture (Nishimura et al.,

2008). us, Japanese people prefer the use of euphe-

mism and indirect expression rather than direct ex-

pression (Hall, 1989).

Partially due to Japanese culture, pediatric hospitaliza-

tions in Japan dier from pediatric hospitalizations in

the United States in several ways: In Japan, there is

limited visitation from siblings and peers, serious diag-

noses are revealed only to parents or caregivers, paren-

tal/familial participation during medical procedures is

restricted, and the length of hospitalization is typically

longer (Hagiwara, 2015). In addition, it is less com-

mon for patients and families in Japan to regularly in-

teract with child life specialists in the hospital because

of the low number of child life specialists in each hos-

pital and the high number of pediatric patients, com-

pared to the United States (JACCLS, 2018).

Japanese child life specialists have reported strict-

er sibling visitation in Japanese hospitals compared

with North American hospitals due to infection

control practices and individual physician authority

(Nishimoto, 2012). For example, even healthy siblings

who are under age 13 are not typically allowed to vis-

it the patient because they have not completed their

pediatric vaccinations (Nishimoto, 2012). However, if

the patient is at end of life, individual physicians may

allow sibling visitation after determining the sibling(s)

do not have symptoms of infection, such as fever,

coughing, or vomiting (Nishimoto, 2012). In addi-

tion, some neonatal and pediatric intensive care units

regularly allow sibling visitation (Nishimoto, 2012).

Telling the truth to children is a controversial issue in

Japan. Parsons et al. (2007) found that 96% of physi-

cians in the United States reported “always” or “most

of the time” telling a child about their cancer diagno-

sis, while only 38% of Japanese physicians reported

doing the same. Furthermore, Japanese pediatricians

have been reported to pessimistically evaluate the ef-

fect of truth telling and try to protect children from

emotional distress by not telling them the truth about

a diagnosis (Hagiwara, 2015; Miyawaki, 2016). Both

of these studies indicate a limitation in understand-

ing the impact of disclosing a diagnosis to pediatric

patients.

ere has been a lack of parental participation during

medical procedures in Japanese hospitals (Hagiwara,

2015). Each hospital, physician, and nurse may have

a dierent opinion about parental involvement in

procedures. Hagiwara (2015) has discussed the im-

portance for child life specialists to advocate for pa-

rental involvement during medical procedures in Ja-

pan. Increasingly, parental involvement is acceptable

in the U.S. pediatric hospital settings (Boles, 2016).

Japanese pediatric hospitalizations tend to last longer

than pediatric hospitalizations in the United States,

specically for patients with leukemia (Hagiwara,

2015). In Japan, children with leukemia typically

need inpatient hospitalization for a few years (Hagi-

wara, 2015), whereas children in North America

mostly receive their treatment in outpatient oncology

clinics (Johnston et al., 2017).

Psychosocial interventions by child life specialists in Ja-

pan are slowly expanding (JACCLS, 2018); however,

child life specialists are still not common in pediatric

hospitals in Japan for two reasons: administrative bud-

geting for the cost of child life specialists and medical

professionals’ questioning of the need for the child life

role (Hagiwara, 2015). Child life services are not eli-

gible for medical service fees, which require hospitals

to create room for child life specialists in their budget

(Hagiwara, 2015; Kitagawa, 2009). In addition, cul-

turally, it is less common to donate money to hospitals

in Japan compared with the donations received by pe-

diatric hospitals in the United States (Adachi, 2010;

Hagiwara, 2015). For example, some hospitals in the

United States have full-time child life specialist posi-

tions sustained solely by donations or private funding

(e.g., MemorialCare Miller Children’s and Women’s

Hospital Long Beach, 2012). In Japan, there are fewer

monetary donations to pediatric hospitals, so child life

positions, among other resources needed for children

in the hospital, are not supported by donations.

Another reason child life specialists are not common

in Japan is due to medical professionals’ questioning

of the need for the child life role. As part of their ed-

ucation, Japanese pediatric nurses receive training to

provide psychosocial interventions for pediatric pa-

tients and their families, especially diagnostic educa-

tion and psychological preparation, more so than pe-

diatric nurses in the United States (Hagiwara, 2015;

Matsudaira, 2010), where child life specialists provide

most psychosocial interventions for pediatric patients

and their families (ACLP, 2018c). erefore, Japanese

child life specialists have to redene their professional

role in collaboration with Japanese pediatric nurses

because both Japanese pediatric nurses and Japanese

child life specialists provide psychosocial interven-

tions for patients and families. For example, if a pe-

diatric primary nurse were to provide diagnostic ed-

ucation and psychological preparation for a patient’s

procedure, the child life specialist would focus on

providing therapeutic play or developmentally appro-

priate diversion for the patient during the procedure.

As a result, this view of the child life role inuences

the expansion of child life services in Japan.

Adolescent and Young Adult Psychosocial

Development

In the pediatric medical setting, the AYA population

includes patients between the ages of 12 and 25 (John-

son et al., 2018; Kullgren et al., 2018; Rosenberg et al.,

2018). Adolescence is dened by the dramatic physi-

cal, cognitive, and psychosocial changes that occur in

human development between the ages of 12 and 18

years (Erikson, 1968; Johnson et al., 2018; Kullgren

et al., 2018). It is characterized by a developing ca-

pacity to think logically and abstractly (Piaget, 1950).

Adolescent cognitive development allows adolescents

to consider theoretical and abstract reasoning, such

as morality, philosophy, ethics, and politics (Piaget,

1950). In his lifespan theory of psychosocial develop-

ment, Erikson (1968) identied the developmental

crisis of adolescence to be identity versus role confu-

sion. In this stage, adolescents experiment with dier-

ent identities (i.e., occupational, social, religious, and

sexual) before settling on their identities within society

(Steinberg, 2002). Successful resolution of the identity

versus role confusion developmental crisis culminates

in a “sense of well-being” and “knowing where one is

going” (Steinberg, 2002, p. 274).

Young adulthood is characterized by the transition

from adolescence to adulthood and is typically de-

ned as ages 18 to 25 years (Berg et al., 2016; Scales

et al., 2016). Some of the transitions experienced in

Wittenberg & Stickley

young adulthood include living away from home for

the rst time; taking on new roles and responsibilities

as college students, employees, spouses, and parents;

and entering intimate sexual and emotional relation-

ships (Scales et al., 2016). Erikson (1968) identied

the stage of intimacy versus isolation as the crisis of

early adulthood. In this stage, young adults develop

intimate emotional relationships with others, or they

fear intimacy with others and become isolated (Erik-

son, 1968). In addition, young adults in the medical

setting face stressors specic to their situation; for ex-

ample, young adult cancer survivors experience other

issues, such as barriers due to a lack of or limited in-

surance or transportation, major life changes, anxiety,

and diculty transitioning from pediatric to adult

care (Berg et al., 2016). Berg and colleagues (2016)

found that young adults need technology-based edu-

cational and psychosocial resources. Hence, for young

adult patients, there are psychosocial interventions

that can support their specic developmental needs.

ere are cultural dierences between AYA in Japan

and the United States. For instance, it is typical for

AYA in Japan to have strong and stable relationships

with their parents, whereas it is typical for AYA in the

United States to form strong relationships with their

peers during this period of development (Rothbaum

et al., 2000; Triandis, 1989). Japanese culture em-

phasizes collectivism and symbiotic harmony, which

is “characterized by a continual pull toward adapting

the self to t the needs of others” (Rothbaum et al.,

2000, p. 1123). us, AYA in Japan maintain emo-

tional closeness, proximity, and harmony with their

parents during adolescence and young adulthood

(Rothbaum et al., 2000). American culture emphasiz-

es individual autonomy and generative tension, which

is characterized by a “struggle between the desire for

closeness and the desire for separation” from parents

during the adolescent years (Rothbaum et al., 2000,

p. 1121). us, AYA in America are encouraged to

be autonomous from a young age, and learn to trans-

fer their emotional attachment from their parents to

their peers during adolescence and young adulthood

(Rothbaum et al., 2000). ese dierences demon-

strate that psychosocial development must be viewed

through a cultural lens (Rothbaum et al., 2000).

Inuence of Hospitalization on Adolescents

and Young Adults in North America

It is dicult for children, adolescents, and young

adults, who are still developing, to cope with hospi-

tal stressors (ACLP, 2018c; Al-Yateem et al., 2015;

Gaynard et al., 1998). Two types of stressors for the

AYA patient population are reviewed: general hospital

stressors and stressors due to chronic and life-threat-

ing diseases.

General Hospital Stressors

General hospital stressors for AYA patients include

dependence on adults, separation from family and

peers, lack of privacy and need for more time to be

alone, fear of bodily injury and pain, fear of loss of

identity, concerns regarding body image and sexuali-

ty, and concerns about peer group status after hospi-

talization (Carter, 2014; Kirchenbauer, 2013; Rollins

et al., 2018). Frequent and long hospitalizations result

in loss of independence and control, which lead to

feelings of anger and frustration (Rollins et al., 2018).

Isolation from peers can be especially dicult during

adolescence (Rollins et al., 2018; Vera et al., 2012).

Attention to privacy and condentiality is an essential

principal to facilitate adolescent trust and participa-

tion in their own medical treatment planning (Rollins

et al., 2018).

Stressors due to Chronic and/or Life-Threating Diseases

Many researchers have found that children and ad-

olescents with chronic diseases tend to have more

psychological problems when compared with healthy

children and adolescents (Carter, 2014; Doka, 1996;

Litt et al., 1982; Parvin & Dickinson, 2010). Rollins

and colleagues (2018) found that the potential eects

of chronic illness or disabilities for adolescents in-

crease their sense of feeling dierent from their peers,

limit job or career opportunities, increase concern

about why they have the disorder, limit opportunities

for heterosexual friendships, decrease their abilities to

master their medical self-care, and lead to diculty

with the transition from the pediatric to adult unit.

Specically, studies have found that medical self-care

(e.g., maintenance of their own physical health) pres-

ents serious stressors for adolescents (Carter, 2014;

Costa Flora & Henriques Gameiro, 2016; Hattori et

al., 2016).

Transition from caregiver-directed care as adolescents

to self-care as young adults is a signicant process for

adolescents who have chronic or life-threating dis-

eases (Hattori et al., 2016; Rollins et al., 2018). is

transition has received attention from many pediatric

departments; however, one issue is the scarcity of in-

stitutions that provide appropriate support for AYA

Child Life Specialists in Japanese Hospitals

patients (Hattori et al., 2016; Rollins et al., 2018).

For example, Hattori et al. (2016) found that only

four out of 101 Japanese institutions had transition

programs for their AYA patients with childhood onset

chronic kidney disease.

Another issue for AYA patients is medical non-com-

pliance. Litt and colleagues (1982) found that ado-

lescents with juvenile rheumatoid arthritis and med-

ical non-compliance reported a poorly developed

self-concept because of the long duration of the

disease and the symptoms present at onset. ese

ndings demonstrate the importance of psychoso-

cial interventions for AYA patients to facilitate their

transition to adult care while supporting their medical

self-compliance.

Pediatric patients with life-threating diseases, along

with their families, struggle to live with the problems

of ongoing illness due to the symptoms of the illness

and eect of medical treatments (Doka, 1996). Specif-

ically, pediatric patients with chronic disease respond

to strict treatment regimens with regressive and de-

pendent reactions, aggressive nonadherence, and im-

paired self-esteem (Doka, 1996; Rollins et al., 2018).

In addition, adolescents may begin to fear that their

life span could be limited by chronic disease or death

(Parvin & Dickinson, 2010; Rollins et al., 2018).

Inuence of Hospitalization on Adolescents

and Young Adults in Japan

ere is a dearth of research on the inuence of hos-

pitalization on the AYA patient population in Japan;

however, two studies have explored this issue. Maeda

(2012) uncovered seven problems recognized by ad-

olescents with chronic illness during hospitalization:

resistance toward opposite sex nurses, physical and

emotional pain from symptoms and treatment, anx-

iety about their future life, restrictions on their daily

life due to hospital rules, loneliness, development and

maintenance of human relationships, and dicul-

ty with nurses who were not empathic. In addition,

Matsuo and colleagues (2004) found that adolescents

with chronic illness were able to recognize their dis-

ease stages, ultimately establishing an identity that in-

corporates their disease.

Psychosocial Interventions for Adolescent

and Young Adults in North America

ere are many types of psychosocial interventions

that child life specialists provide adolescent patients

in the pediatric hospital setting in the United States,

including encouragement of socialization with peers,

respect for independence and privacy, provision of

therapeutic activities to promote emotional expres-

sion, education for medical procedures/diagnoses,

continuation of academic goals, and support for the

transition from pediatric to adult health care services

(Rollins et al., 2018). While Rollins and colleagues

(2018) discuss these psychosocial interventions for

hospitalized adolescents, there is a dearth of empirical

literature on this topic. However, several psychosocial

interventions have been studied with the hospitalized

adolescent population: encouragement of medical

compliance by collaborating with family and vari-

ous health care professionals, support for adolescents

during the transition from pediatric to adult care, and

support for end-of-life care.

Several studies have investigated medical non-compli-

ance in adolescence. It is important for those support-

ing medical compliance of adolescents to collaborate

with adolescents, their family members, multidisci-

plinary health care professionals, and educational pro-

fessionals; to provide a comprehensive intervention

that includes consideration of biological and psycho-

social factors; to establish therapeutic relationships

with the adolescent and their parents; to support their

coping; and to encourage their motivation toward

medical compliance (Carter, 2014; Lask, 2003).

Several studies have discussed supporting adolescents

in the transition from pediatric to adult care (Hatto-

ri et al., 2016; Rollins et al., 2018). Eective inter-

ventions should include consideration of adolescents’

understanding of the conditions, related treatments,

medications, and precautions, and should inspire ad-

olescents’ abilities to verbalize health care concerns

and needs, become compliant with medical regimens,

and demonstrate their interest in the transfer to adult

care (Carter, 2014; Hattori et al., 2016; Rollins et al.,

2018).

One of the essential roles for child life specialists in

the hospital setting is supporting children and their

families with issues related to death, dying, and be-

reavement (ACLP, 2018c). Most child life programs

in the United States oer interventions for pediatric

patients and their families at end of life, specically

child life education programs about death and dying

(Parvin & Dickinson, 2010; ACLP, 2018c). Child

life specialists have an understanding of all aspects of

death, dying, and bereavement and are prepared for

Wittenberg & Stickley

psychosocial crises or end-of-life events in the hospital

(ACLP, 2018c).

Psychosocial Interventions for Adolescent

and Young Adults in Japan

ere has been limited empirical research about psy-

chosocial interventions for AYA patients in Japan.

However, Maeda (2012) reported several communi-

cation and information-gathering needs of AYA pa-

tients in Japan with chronic illness: interaction with

peers of the same sex and age, communication with

the same generation, information provided by expe-

rienced people with the same disease, information

provided by medical sta, information from same-sex

medical professionals, information from non-medical

professionals, and family communication (Maeda,

2012).

Present Study

A child life specialist is the health care professional

dedicated to providing psychosocial interventions for

AYA patients in health care facilities. e child life

profession has existed in North America for almost a

century (Turner & Grissim, 2014); however, the child

life specialist profession is still developing in Japan.

ere is a dearth of research on the similarities and

dierences in the child life specialist role in coun-

tries and cultures outside of North America (Carter,

2014; Hagiwara, 2015; Ishizuka, 2017; Nishimoto,

2012). e purpose of this exploratory study was to

better understand the role of the child life specialist

in providing psychosocial interventions for AYA pa-

tients in Japanese hospitals. An additional aim of this

study was to understand the challenges that child life

specialists in Japan face when providing psychosocial

interventions for the AYA patient population. ere-

fore, this study explored three research questions:

1. What types of psychosocial interventions do child

life specialists provide for AYA patients in Japan?

2. What do child life specialists perceive as the most

eective psychosocial interventions for AYA pa-

tients in Japan?

3. What challenges do child life specialists encoun-

ter when providing psychosocial interventions for

AYA patients in Japan?

Method

Participants

Forty-two Japanese child life specialists were invited

to participate in the study; the overall response rate

for the survey was 12%. Participants (n = 5) consisted

of Japanese child life specialists (M

age

= 31.2, SD =

4.9) who worked in Japan and were clinically trained

in North America. Participants were female (n = 5),

never married (n = 3), and had earned graduate de-

grees (n = 3). Four participants had worked as child

life specialists in Japan for 5 to 7 years, and one partic-

ipant had worked as a child life specialist for less than

one year. No participants had worked as a paid child

life specialist in North America prior to their work as

a child life specialist in Japan. All participants were

full-time day shift employees who worked more than

36 hours per week. Four participants worked at Japa-

nese national hospitals and one worked at a Japanese

private hospital.

ree participants reported the existence of psycho-

social support teams within their hospital, which in-

cluded the child life specialist and a social care worker

as common team members. Other team members

included clinical psychologists (n = 2), child health

nurses/pediatric emergency nurses (n = 2), a child

care worker (n = 1), and a professional providing

canine-assisted therapy (n = 1). Four participants

reported spending 25% of their time with the AYA

population, whereas one reported spending 75% of

their time with the AYA population. Hospital units

and departments where participants worked are listed

in Table 1.

Procedure

is study was approved by the Institutional Review

Boards of both authors’ institutions. e researcher

emailed the study invitation and survey link to the

JACCLS forum. Child life specialists who were mem-

bers of JACCLS (approximately 42 child life special-

ists) received the study invitation and survey link via

the JACCLS forum email. e survey data was col-

lected using Qualtrics, an online survey management

system. Informed consent was obtained on the rst

page of the electronic survey. e online survey took

approximately 30 minutes to complete. Once partic-

ipants completed the online survey, they were eligible

to receive a ¥1,000 ($10 U.S. equivalent) gift card to

Amazon.co.jp. e consent form included both Jap-

anese and English translations, and the survey was in

Child Life Specialists in Japanese Hospitals

Japanese. Participants were free to type their responses

in Japanese or English.

Measure

A 21-item mixed-method survey was created speci-

cally for this study, titled A Survey of Japanese Child

Life Specialists’ Perspectives about Psychosocial In-

terventions for the AYA Patient Population in Japan.

(See Appendix). is survey was divided into three

sections: demographic questions, questions about the

experiences child life specialists had with the AYA pa-

tient population in Japan, and open-ended questions

about child life specialists’ personal opinions and ex-

periences of culture and child life practices with the

AYA patient population in Japan and North America.

Questions for this survey were developed based on

relevant literature and adapted from previous surveys:

Question numbers 8, 13, 14, and 18 were adapted

from Kirchenbauer’s (2013) survey, where peer review

was used to establish the content validity. Question

numbers 15, 16, and 17 were adapted from Carter’s

(2014) survey, Survey Questions for Professionals

Working with Adolescents, where initial data and

analysis were reviewed by faculty for content validity

and reliability. Additional questions were included in

this survey that were not used for this paper.

Data Analysis

Frequency analyses were used to answer the rst two

research questions with corresponding survey items

14 and 15, respectively. For question 15, response

rankings were coded for the presence or absence of

the response choice. For example, if a participant’s re-

sponse ranked the “emotional support” intervention

at any ranking (1 to 5), then the researchers coded this

as 1, denoting the presence of the response choice. If

a participant’s response did not rank the “emotional

support” intervention, then the researchers coded this

as 0, denoting the absence of the response choice. All

participant transcripts were translated from Japanese

to English, blind reviewed by the two authors, and

item 17 was coded for themes. e codes were formed

based on the emergent themes. e nal codes were

decided by the two researchers who reviewed the par-

ticipant transcripts.

Results

Psychosocial Interventions Provided

for AYA Patients by Child Life Specialists

in Japanese Hospitals

One purpose of this research study was to identify the

types of interventions child life specialists provided for

their AYA patients in Japan. All child life specialists (n

= 5) reported that the most common psychosocial in-

terventions provided for AYA patients in Japan were

individual therapeutic/developmentally appropriate

play activities, emotional support, and family and/

or sibling support. Four child life specialists reported

providing preparation for medical procedures, dis-

traction/coping support during medical procedures,

interventions for changes in body image, encourage-

ment for patients’ academic career in collaboration

with school teachers, and bereavement support for

AYA patients in Japan. All psychosocial interventions

provided for the AYA patient population by child life

specialists in Japan are listed in Table 2.

Wittenberg & Stickley

Table 1

Hospital Units/Departments Where Certied Child Life

Specialists Worked

Hospital Unit/Department Frequency %

General pediatric 3 60.0

Medical/surgery 1 20.0

Hematology/oncology 2 40.0

Pulmonary 1 20.0

Neurology/psychiatry 2 40.0

Intermediate care 4 80.0

Pediatric intensive care unit (PICU) 3 60.0

Neonatal intensive care unit (NICU) 3 60.0

Imaging/radiology 3 60.0

Surgery 4 80.0

Emergency room 4 80.0

Outpatient clinics 1 20.0

Special events 1 20.0

Other:

総合周産期病棟

(Maternal and perinatal care unit)

1 20.0

Other:

がんセンター小児科（血液疾患は

扱っていない

(Pediatric unit at the cancer center)

1 20.0

Other:

成人患者のこども支援

(Support for children whose family are

patients in the hospital)

1 20.0

Note. n = 5.

Child Life Specialist-Perceived Effective

Psychosocial Interventions for AYA Patients

in Japanese Hospitals

Out of the 14 possible choices of child life interven-

tions, including a choice where participants could

type in an “Other” child life intervention, child life

specialists (n = 3) perceived providing emotional

support for the patient and providing family and/or

sibling support as the most eective psychosocial in-

terventions for AYA patients. Child life specialists (n

= 2) perceived that encouraging transition to the adult

unit, encouraging the patient’s academic career with

school teachers, and providing bereavement support

as the next most eective psychosocial interventions

for AYA patients in Japan. A complete list of child

life specialist-perceived eective psychosocial inter-

ventions provided for the AYA patient population are

listed in Table 3.

Challenges to Child Life Specialists’ Provision

of Psychosocial Interventions for the

AYA Patient Population in Japan

Results indicated that child life specialists perceived

the biggest challenges to providing psychosocial in-

terventions for AYA patients in Japan were the (a)

promotion of emotional expression in individual

and group settings (e.g., “Prompting emotional ex-

pression,” translated from a participant response of “

感情表出を促すこと。”); (b) lack of developmentally ap-

propriate resources for adolescents, including privacy

from younger children (e.g., “Dierences in resourc-

es and environments. America has a lot of donated

toys, but Japan does not. Also, although there is a play

room, there is not a teen room, [so that is why there

is diculty to protect teen’s privacy appropriately],”

translated from a participant response of “

資源や環境

の違い。アメリカはオモチャの寄付などがたくさんあったが日本はな

Child Life Specialists in Japanese Hospitals

Table 2

Types of Child Life Interventions Provided for Adolescent and Young

Adult Patients in Japan

Child life intervention Frequency %

Individual therapeutic/developmentally

appropriate play activities

5 100.0

Group therapeutic/developmentally

appropriate play activities

3 60.0

Preparation for medical procedures 4 80.0

Distraction/coping support during

medical procedures

4 80.0

Emotional support 5 100.0

Providing educational resources 3 60.0

Providing opportunities to encourage

their peer relationships

2 40.0

Intervention for changes of their

body image

4 80.0

Encouraging their medical compliance 2 40.0

Encouraging their transition to adult unit 2 40.0

Encouraging their academic career

with school teachers

4 80.0

Bereavement support 4 80.0

Pain management 3 60.0

Family and/or sibling support 5 100.0

Other:

ピアサポートの提供

(Providing opportunities to encourage

their peer relationships)

1 20.0

Note. n = 5.

Table 3

Certied Child Life Specialists’ Perceptions on the Most Effective

Child Life Interventions Provided for Adolescent and Young Adult

Patients in Japan

Child life intervention Frequency %

Individual therapeutic/developmentally

appropriate play activities

1 25.0

Group therapeutic/developmentally

appropriate play activities

1 25.0

Preparation for medical procedures 1 25.0

Distraction/coping support during medi-

cal procedures

1 25.0

Emotional support 3 75.0

Providing educational resources 1 25.0

Providing opportunities to encourage

their peer relationships

1 25.0

Intervention for changes of their

body image

1 25.0

Encouraging their medical compliance 0 0.0

Encouraging their transition to adult unit 2 50.0

Encouraging their academic career

with school teachers

2 50.0

Bereavement support 2 50.0

Pain management 1 25.0

Family and/or sibling support 3 75.0

Note. n = 4.

い。また、プレイルームはあるが、ティーンルームなどの環境は整って

おらず、部屋を確保することが難しい。

[なので、ティーンに対して ]プ

ライバシーへの配慮 [の難しさがある。]

”); and (c) low child

life prioritization of AYA patients due to the limited

number of child life specialists in Japanese hospitals

(e.g., “Because of the small number of child life spe-

cialists, the priority of support for adolescents at out-

patient clinics and AYA generation during treatments

and examinations is lower” translated from a partic-

ipant response of “CLS

の人数が少ないため、外来での思春

期、

AYA世代への処置、検査サポートの優先順位が低くなってしま

うこと

” and “A child life specialist does not consider

the priority of the intervention, so nurses deal with

the prioritizing and tell it to the child life specialist,”

translated from a participant response of “CLS

自身が

介入優先度を検討するのではなく、看護師によってスクリーニングさ

れた方への対応をしている。

”).

In addition, there was a belief that providing psycho-

social interventions for AYA patients was given high-

er priority by child life specialists in North America

compared with child life specialists in Japan (e.g., “I

think understanding/recognition of the importance

to support adolescents and AYA generation is higher

in the United States,” translated from a participant

response of “

思春期やAYA世代へのサポートの重要性に対す

る認識はアメリカの方が高い印象はあります。

”). Also, partici-

pants reported that, due to the number of child life

specialists in Japan compared to North America, the

role and duties of the child life specialist in Japan are

still developing, whereas the role and duties of the

child life specialist are more dened in North America.

Discussion

Types of Psychosocial Interventions

for AYA Patients in Japan

e most common psychosocial interventions pro-

vided by child life specialists for AYA patients in

Japan were individual therapeutic/developmentally

appropriate play activities, emotional support, and

family and/or sibling support. Similar to literature on

psychosocial interventions for AYA patients in North

America (Rollins et al., 2018), psychosocial interven-

tions, including emotional support, medical proce-

dure/illness education, support for changes in body

image, bereavement support, and encouragement of

transition to adult units were also provided for AYA

patients in Japan.

As expected, our ndings align with the literature in

regards to child life specialists commonly providing

individual therapeutic/developmentally appropriate

play activities and emotional support for AYA pa-

tients (Gaynard et al., 1998; ACLP, 2018c), as well as

consideration for the developmental needs of AYA pa-

tients in the hospital (Maeda, 2012). In addition, the

common provision of emotional support and expres-

sive activities by child life specialists in Japan could

reect the need for child life specialists to mitigate the

high-context communication style of Japanese culture

so that AYA patients may feel emotionally supported

and free to express their feelings regarding hospitaliza-

tion, illness, and development.

Child Life Specialists’ Perceptions

of Effective Psychosocial Interventions

for AYA Patients in Japan

e top two psychosocial interventions that child life

specialists perceived as most eective for AYA patients

in Japan were providing emotional support to the

AYA patient and providing family and/or sibling sup-

port. Providing emotional support for the AYA pa-

tient in Japan aligned with the literature for the AYA

patient in North America, which stated that providing

emotional support for adolescents is helpful for im-

mediate hospital stressors and typical developmental

stressors (Rollins et al., 2018; ACLP, 2018c). Howev-

er, the second child life specialist-perceived eective

intervention, family and/or sibling support, did not

align with the U.S. literature (Rollins et al., 2018;

ACLP, 2018c). Perhaps this discrepancy was observed

because Japanese youth tend to nd relating to their

parents important, whereas youth in North Ameri-

ca tend to view relationships with peers as signicant

(Rothbaum et al., 2000; Triandis, 1989). In addition,

it is interesting that family and/or sibling support was

included as one of the most eective psychosocial in-

terventions provided by Japanese child life specialists

because of the limited sibling visitation practices in

Japan. Perhaps these ndings indicate that sibling

visitation in Japan is occurring more frequently in

practice than Nishimoto (2012) described, and that

there is a changing culture regarding sibling visitation

in Japanese pediatric hospitals. Alternatively, perhaps

sibling support is seen as important precisely because

siblings are not allowed to visit. us, family and sib-

ling support may include providing parents with in-

formation on supporting siblings at home or helping

the family maintain connections while the siblings are

separated.

Wittenberg & Stickley

Challenges to Providing Psychosocial

Interventions for AYA Patients in Japan

e challenges to providing interventions for AYA pa-

tients in Japan were (a) the promotion of emotional

expression for AYA patients in individual and group

settings, (b) the lack of developmentally appropriate

resources for AYA patients, and (c) low child life pri-

oritization of AYA patients due to the limited number

of child life specialists in Japanese hospitals.

Promotion of Emotional Expression in Individual

and Group Settings

Child life specialists in Japan reported the challenge

of promoting emotional expression for AYA patients

in individual and group settings. is could be due

to the high-context communication style of Japanese

culture. Japanese people prefer nonverbal, indirect

emotional expression rather than direct emotional

expression, and prioritize the group’s feelings over

individual feelings (Hall, 1989; Nishimura et al.,

2008). erefore, it may be expected that facilitating

AYA emotional expression would be challenging for

Japanese child life specialists in individual and group

settings. Using nonverbal communicative and assess-

ment tools, such as the Wong-Baker FACES Pain

Rating Scale (Wong & Baker, 1988), a feelings chart,

and/or expressive art may be benecial to encourage

AYA patients’ emotional expression in Japan.

Lack of Developmentally Appropriate Resources

for Adolescents

In Japan and the United States, child life services are

not eligible for medical service or reimbursement

fees (Minami, 2017; Seo, 2018). erefore, hospi-

tals must create room for child life specialists in their

budget or support child life programs through grant

funding (Hagiwara, 2015; Kitagawa, 2009). Cultur-

ally, it is less common to donate money to hospitals

in Japan compared with the donations received at

pediatric hospitals in the United States (Hagiwara,

2015), which include monetary and resource do-

nations (Snipes & Oswald, 2010). For example,

during the winter holidays in the United States, an

abundance of new toys; games, including electronic

game systems and tablets; and movies are donated to

children’s hospitals. ese donations help to restock

child life playrooms and teen rooms throughout the

entire year (until the next winter holiday). Monetary

donations can help pay for grant-funded child life

positions, electronic game system carts, tablets, and

playroom and teen room updates or renovations. e

lack of monetary and resource donations to pediatric

hospitals in Japan may be the reason behind the lack

of developmentally appropriate activities for AYA pa-

tients in Japan. For instance, even though adolescent

privacy is important, there are no teen rooms or ado-

lescent spaces in the pediatric units in Japan. ere-

fore, AYA patients are grouped with young children

in the playroom, which does not provide the privacy

needed. However, child life specialists use the limited

amount of developmentally appropriate resources for

AYA patients for distraction and pain management

during medical procedures.

Low Child Life Prioritization of AYA Patients

An additional challenge listed by child life specialists

in Japan was the low prioritization of AYA patients in

their daily workload. Because there is a minimal bud-

get for child life specialists in Japanese hospitals, child

life specialists must prioritize patients to whom they

provide interventions. Child life specialists use stress

potential assessments, including the child’s develop-

mental level, the child’s temperament, parental anxi-

ety, family characteristics, chronic versus acute illness

or injury, and past medical experiences to assist with

patient prioritization (Gaynard et al., 1998; Koller,

2008; Staab et al., 2013). Younger children are espe-

cially vulnerable to anxiety and stress from a traumatic

medical experience, so these children are often priori-

tized by child life specialists (Staab et al., 2013). ere-

fore, due to the limited number of child life specialists

in Japanese hospitals, there is a pattern of low priori-

tization of AYA patients seen by child life specialists.

In addition, the other possible reason for the lack of

child life specialists is that medical professionals in

Japan often question the need for the child life role

(Hagiwara, 2015). Japanese pediatric nurses receive

training to provide psychosocial interventions for pe-

diatric patients and their families, especially diagnos-

tic education and psychological preparation, more so

than pediatric nurses in the United States (Hagiwara,

2015; Matsudaira, 2010). Because pediatric nurs-

es have training in psychosocial interventions, the

separate role of the child life specialist may still be

questioned in Japan and inuence the slow expansion

of child life services in Japan. Encouraging hospital

sta recognition of the child life role and educational

background may be benecial. For example, similar

to child life programs in the United States, a presenta-

tion about the child life role in new hospital employee

orientation, a poster or business card explaining when

Child Life Specialists in Japanese Hospitals

medical professionals should call child life specialists,

and a training about child-friendly language or po-

sitioning during medical procedures can be used to

advocate for the role of the child life specialist in Jap-

anese hospitals. Child life specialists may gather in-

formation about existing psychosocial interventions

provided by Japanese nurses through observation,

review of nursing chart notes, or verbal communica-

tion. en, distinguishing roles to divide psychoso-

cial interventions between Japanese pediatric nurses

and child life specialists may be benecial, enabling

the expansion of child life services and increasing the

number of hired child life specialists in Japan.

Limitations

ere are several limitations to this study. e small

number of participants limits the generalization of

the results because participants were approximate-

ly 12% (n = 5) of all child life specialists invited to

participate. Due to the small number of participant

responses, the qualitative analysis was not as rigorous

as originally planned. For future studies, it would be

benecial for researchers to invite Japanese child life

specialists to participate in research in months other

than April and May. In Japan, April is the month

when school starts, and child life specialists might

have been too busy to answer this survey during the

beginning of the school year.

An additional limitation of this study was the ques-

tionnaire, specically the response option of “fami-

ly and/or sibling support” in items 14, 15, and 16.

Future studies should revise this questionnaire and

separate “family support” and “sibling support” in the

response option to further specify the types of inter-

ventions provided by Japanese child life specialists.

Another limitation was that this study focused on

child life specialists’ experiences with AYA patients

in general, so it did not separate child life specialists’

experiences with AYA patients with chronic or acute

illnesses, specic diagnoses (e.g., leukemia), or special

needs. Future research could explore child life inter-

ventions for AYA patients in Japan with specic dis-

ease diagnoses or special needs to better understand

how child life specialists address their nuanced psy-

chosocial needs. Also, future research is necessary in

understanding the child life specialist role in Japan

for children of all ages, especially to help mitigate the

challenges child life specialists experience when pro-

viding interventions to AYA patients.

Implications for Practice

is research study is relevant to child life practice be-

cause the results oer new information about the psy-

chosocial interventions provided for AYA patients in

Japan, as well as the challenges that child life special-

ists face when providing psychosocial interventions

for AYA patients in Japan. e information discov-

ered about the challenges that child life specialists face

can be explored in future research so that solutions to

the challenges can be considered.

is research study is especially relevant for Japanese

child life specialists and child life internship super-

visors in North America who mentor international

student interns who plan to return to Japan and prac-

tice child life. e results of this study could assist

child life students in better understanding how to

serve and support AYA patients in Japan. Nishimo-

to (2012) stated that cultural dierences in child life

services should be explored in each country in order

to help child life specialists work more eectively with

children and their families in the health care environ-

ment. Because Japan has the largest population of

child life specialists outside of the United States and

Canada, future research is needed to provide more

detailed information about the interventions imple-

mented by child life specialists for AYA patients in

Japan. Child life specialists working in Japan are typ-

ically trained in North America and must translate

their practice for the Japanese hospital setting once

they leave North America. Additional information is

needed to determine whether this is the most eective

way to train child life specialists for Japanese practice,

and how the dierences in the North American and

Japanese cultures may aect training and practice.

Conclusion

is study adds to the scant literature on the child

life specialist role in Japan and the psychosocial in-

terventions that child life specialists provide for AYA

patients in Japan. e most common psychosocial in-

terventions provided for AYA patients in Japan were

individual therapeutic/developmentally appropriate

play activities, emotional support, and family and/or

sibling support. e latter two were perceived as the

most eective interventions for AYA patients in Japan

by child life specialists. In addition, child life special-

ists in Japan encounter several challenges to providing

psychosocial interventions for the AYA patient pop-

ulation in Japan, including the promotion of emo-

tional expression, lack of developmentally appropriate

Wittenberg & Stickley

resources, and low child life prioritization due to the

limited number of child life specialists in Japan. Fu-

ture research is needed to understand the full scope of

psychosocial interventions provided for AYA patients

in Japan by child life specialists.

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Wittenberg & Stickley

Appendix

A Survey of Japanese Child Life Specialists’ Perspectives about

Psychosocial Interventions for Japanese Adolescents

Item Number Survey Item

1 – 11 Demographic questions and questions about work history and current work

12 Do you have a psychosocial support team? (In this survey, a psychosocial support team is dened by a team that

provides psychosocial support, such as child life specialists, social workers, music therapists, and/or chaplains/

spiritual supports.)

· Yes

· No

If “Yes,” who is a part of your psychosocial support team? (Choose all that apply).

· Child Life Specialist

· Child Care Worker

· Hospital Play Specialist

· Child Care Specialist

· Clinical Psychologist

· Psychological Physician

· Child Health Nursing/ Pediatric Emergency Nursing

· Social Care Worker

· Music Therapist

· Hospital Pastoral Service

· School Teachers

· Hospital Dog therapy

· Hospital Clown Service

· Other (please specify): (type in)

13 On a typical workday, what percent of your time is spent working with the adolescent population in Japan?

· 0% of your time

· 25% of your time

· 50% of your time

· 75% of your time

· 100% of your time

14 What kind of child life interventions do you provide for adolescents in Japan? (Choose all that apply).

· Individual effective therapeutic/developmentally appropriate play activities

· Group effective therapeutic/developmentally appropriate play activities

· Preparation for medical procedures

· Distraction/coping support during medical procedures

· Emotional support

· Providing educational resources

· Providing opportunities to encourage their peer relationships

· Intervention for changes of their body image

· Encouraging their medical compliance

· Encouraging their transition to adult unit

· Encouraging their academic career with school teachers

· Bereavement support

· Pain management

· Family and/or sibling support

· Other: (type in)

Child Life Specialists in Japanese Hospitals

Item Number Survey Item

15 In your opinion, which child life interventions are the most effective for adolescents in Japan? Please rank the top ve

interventions in level of effectiveness: 1-5. One being the most effective and 5 being the least effective.

· Individual effective therapeutic/developmentally appropriate play activities

· Group effective therapeutic/developmentally appropriate play activities

· Preparation for medical procedures

· Distraction/coping support during medical procedures

· Emotional support

· Providing educational resources

· Providing opportunities to encourage their peer relationships

· Intervention for changes of their body image

· Encouraging their medical compliance

· Encouraging their transition to adult unit

· Encouraging their academic career with school teachers

· Bereavement support

· Pain management

· Family and/or sibling support

· Other: (type in)

16 In your opinion, which child life interventions might not be necessary for adolescents in Japan? (Choose all that apply).

· Individual effective therapeutic/developmentally appropriate play activities

· Group effective therapeutic/developmentally appropriate play activities

· Preparation for medical procedures

· Distraction/coping support during medical procedures

· Emotional support

· Providing educational resources

· Providing opportunities to encourage their peer relationships

· Intervention for changes of their body image

· Encouraging their medical compliance

· Encouraging their transition to adult unit

· Encouraging their academic career with school teachers

· Bereavement support

· Pain management

· Family and/or sibling support

· Other: (type in)

· None

17 (Short answer) What is most challenging about providing child life interventions for adolescents in Japan?

18 (Short answer) From your experience, what are specic interventions, techniques, or skills that are helpful for child life

specialists to know when working with adolescents in Japan?

19 In your opinion, what are the differences in child life interventions for adolescents in Japan and adolescents in North

America?

20 In your opinion, what are the differences in healthcare workers’ understanding of the child life specialist role and job

duties in Japan and North America?

21 What recommendation(s) would you give for Japanese child life students in North America to provide effective psychoso-

cial interventions for Japanese adolescents in the future?

Wittenberg & Stickley