Social adjustment in children with cancer

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Social adjustment in children with cancer
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Thesis (Ph.D.)--University of Florida, 1999.
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Bibliography: leaves 153-166.
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by Wendy L. Kubar.
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Vita.

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SOCIAL ADJUSTMENT IN CHILDREN WITH CANCER


By

WENDY L. KUBAR










A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE
UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE
REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY

UNIVERSITY OF FLORIDA


1999















ACKNOWLEDGEMENTS


First, I wish to thank my committee chair and advisor,

Eileen B. Fennell, Ph.D., for her support, suggestions,

guidance, and patience during this project. I am also

thankful to James J. Algina, Ed.D., Gary R. Geffken, Ph.D.,

James R. Rodrigue, Ph.D., and James H. Johnson, Ph.D. for

their assistance and input into this investigation. In

addition, I owe thanks to the children and parents who

graciously participated in this study. Fourth, I wish to

thank my parents, sister, and Robert Rogachefsky for their

encouragement and support. Lastly, I dedicate this project

to the memory of my grandmother, Rose Duberstein, who was

always proud of my academic aspirations and achievements.
















TABLE OF CONTENTS




ACKNOWLEDGEMENTS ......................

LIST OF TABLES ........................


ABSTRACT .........................................


INTRODUCTION ...........................................

Overview of Pediatric Cancer .......................
Social Development .................................
Social Competence ..................................
Social Functioning .................................
Research on Psychosocial Adjustment to Cancer ......
Rationale and Hypotheses ...........................

METHOD ..................................................

Participants .......................................
Measures ...........................................
Procedure ..........................................

RESULTS ..................................................

Demographic and Cancer Information .................
Measure Information ................................
Comparisons Between the Cancer and Control Groups ..
Comparisons Within the Cancer Group ................


..... vi


4
20
26
35
46
55

61

61
62
77

84

84
96
103
108


DISCUSSION ............................................ 113

APPENDIX A DEMOGRAPHIC QUESTIONNAIRE .................. 129

APPENDIX B CANCER QUESTIONNAIRE ....................... 132



iii












APPENDIX C



APPENDIX D


INFORMED CONSENT FOR NON-CNS CANCER
PARTICIPANTS ............................

INFORMED CONSENT FOR CNS CANCER


PARTICIPANTS ............................. 142

APPENDIX E INFORMED CONSENT FOR CONTROL PARTICIPANTS .. 150

REFERENCES ............................................. 153

BIOGRAPHICAL SKETCH .................................... 167


page



134















LIST OF TABLES

Table page

1. Theories of Social Development .............. 25

2. Theories of Social Competence ............... 34

3. Measure Information ........................ 63

4. Demographic Information ..................... 88

5. Categorical Disease Variables ............... 92

6. Non-Categorical Disease Variables ........... 95

7. Diagnosis Information ...................... 97

8. Descriptive Statistics ..................... 99

9. SAICA-CBCL Scale and Subscale Comparisons ... 102















Abstract of Dissertation Presented to the Graduate School of
the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy

SOCIAL ADJUSTMENT IN CHILDREN WITH CANCER

By

Wendy L. Kubar

August 1999


Chairman: Eileen B. Fennell, Ph.D.
Major Department: Clinical and Health Psychology

As the prognosis and survival rate for most pediatric

cancers have improved, studying the social adjustment of

children with cancer has taken on greater importance given

that social functioning has implications for both short-term

and long-term adjustment. Studies that can identify vari-

ables associated with social maladjustment among pediatric

oncology patients would be useful since this information

could be used to target those children in most need of so-

cial intervention. The main focus of the present research

was to examine the relationships among individual character-

istics, disease characteristics, psychological variables,









and children's social functioning. Healthy children were

included as a comparison group since this made it possible

to examine whether pediatric cancer patients differed from

healthy youth in background characteristics as well as psy-

chosocial variables.

Study participants were 175 children between 5 and 12

years of age. Information was gathered from parents, medi-

cal personnel, and children via their responses to question-

naires. Statistical analyses revealed that children with

cancer had worse social adjustment, lower levels of friend

support, and higher levels of social anxiety when contrasted

with healthy children. For all children, higher levels of

social support and lower levels of social anxiety were asso-

ciated with better social adjustment. Within the Cancer

Group, poor adjustment was associated with having limited

friend support, a high level of social anxiety, greater con-

straints in socialization, and being on treatment or having

residual disease/treatment effects. Having a brain tumor

was also related to lower social functioning, but to a les-

ser degree. The implications of the various findings with

regard to social intervention programs for pediatric onco-

logy patients are discussed.


vii















INTRODUCTION


Although childhood cancer is relatively rare when com-

pared to adult cancer, cancer is still a leading cause of

death in pediatric populations (Miller, Young, & Novakovic,

1994; Nemes & Donahue, 1994; Stehbens, 1988). Fortunately,

medical advances since the 1960s such as improvements in

medical treatments and better technology, have led pediatric

cancer to become best conceptualized as a life-threatening

chronic illness rather than an acute fatal disease (Baum &

Baum, 1989; Eiser, 1998; Michael & Copeland, 1987; Miller et

al. 1994; Powers, Vannatta, Noll, Cool, & Stehbens, 1995;

Rowland, 1989; Stehbens, 1988). As the prognosis and sur-

vival rates for most childhood cancers have improved, ad-

dressing social functioning in pediatric oncology patients

have taken on greater importance given that social function-

ing has implications for both short-term and long-term psy-

chological adjustment (LaGreca, 1990; Rowland, 1989; Siegel,

1990; Spirito, DeLawyer, & Stark, 1991).











Research has consistently revealed that the quality of

peer relationships during childhood plays a vital role in

adjustment throughout the life-span (Coie & Cillessen, 1993;

LaGreca, 1990; Parker & Asher, 1987; Spirito, et al. 1991).

For instance, when compared to individuals with a history of

average peer functioning, people with a history of poor peer

relations have been found to demonstrate elevated levels of

numerous difficulties in adolescence and adulthood. These

troublesome outcomes include higher than average rates of

externalizing and internalizing behavior problems, school

dropout, and criminality (Coie & Cillessen, 1993; Parker &

Asher, 1987). Congruent with the findings from studies of

the general population, there are some indications from the

chronic disease literature that children with good peer re-

lations have better illness/disease adaptation than those

with poor peer relations (LaGreca, 1990).

While most research to date, which will be discussed in

considerably greater detail later, suggests that the major-

ity of pediatric cancer survivors have approximately normal

levels of social functioning, there is some evidence that a

significant minority of children with cancer do experience











psychological difficulties and could benefit from interven-

tion (Kazak, 1994; Kazak and Meadows, 1989; Kupst, 1994;

Kupst, et al. 1995; Noll, Bukowski, Rogosch, LeRoy, & Kul-

karni, 1990; Noll, Ris, Davies, Bukowski, & Koontz 1992;

Noll, Bukowski, Davies, Koontz, & Kulkarni, 1993; Spirito et

al. 1990). LaGreca (1990) asserts that diseases which are

most likely to have an adverse effect on children's social

functioning are those illnesses that restrict physical ac-

tivities, disturb normal daily routines, affect physical ap-

pearance, and necessitate life-style changes. Since cancer

appears to satisfy all of LaGreca's (1990) criteria for a

disease that has a strong potential for disrupting chil-

dren's peer relations, studying the social functioning of

pediatric oncology patients seems to be a worthwhile en-

deavor. As noted by LaGreca (1990) and Kupst et al. (1995),

investigations that can help identify variables associated

with an increased probability of social maladjustment among

children with cancer would be particularly useful. Informa-

tion gathered from such studies could then be utilized to

target the children who are in the greatest need of social

interventions.











Overview of Pediatric Cancer

Types and Symptoms of Childhood Cancer

The cancers of childhood are highly diverse. Leukemi-

as or cancers of the blood are the most common malignancies

in childhood (Miller et al. 1994; Powers et al. 1995; Steh-

bens, 1988). Usually of unknown etiology, leukemias origi-

nate in the child's bone marrow, which starts to produce ma-

lignant cells and results in an increased white blood cell

count (Stehbens, 1988). Typical symptoms of the majority of

leukemias are paleness, fatigue, fever, a proneness to in-

fection, and easy bruising and bleeding (Meadows, Belasco, &

Sinniah, 1992; Stehbens, 1988).

Comprising 30 to 40% of all pediatric cancers, acute

lymphocytic/lymphoblastic leukemias or ALL are a group of 7

diseases that represent the most frequent type of leukemia

in children (Miller et al. 1994; Stehbens, 1988). The inci-

dence of ALL peaks between 3 and 5 years of age (Meadows et

al. 1992). On the other hand, approximately 20% of child-

hood leukemias are acute non-lymphocytic or acute myeloid

cancers (i.e., ANLL) (Belasco, Sinniah, & Meadows, 1992).

When compared to ALL, children with ANLL tend to be older










and have a greater probability of presenting with chloromas

(i.e., a solid leukemic mass with surface greenish color in

a freshly cut specimen) (Belasco, et al. 1992). ANNL is

also more likely than ALL to develop as a secondary cancer

(Belasco, et al. 1992). Acute myeloblastic, acute mono-

cytic, and acute megakaryoblastic are among the seven sub-

types of ANNL (Belasco, et al. 1992).

Relatively rare in childhood, chronic myeloid leukemias

(CML) make up 2 to 5% of pediatric leukemias. CML involves

the presence of the Philadelphia chromosome, which indicates

a translocation of the long arms of chromosomes 9 and 22

(Lange, 1992). Frequently having an insidious symptom on-

set, CML is often characterized by malaise, weight loss, and

splenomegaly (Lange, 1992). Most children with CML develop

a blast crisis that requires intervention (Lange, 1992).

Children can also have preleukemic states that often

develop into overt leukemia (Lange, 1992). These preleuke-

mic states typically have symptoms similar to those of full-

blown leukemias (Lange, 1992). Interestingly, a preleukemic

phase is frequently seen in disorders associated with a high










risk of developing leukemia, such as neurofibromatosis,

Down's syndrome, and Fanconi's anemia (Lange, 1992).

Approximately 20% of pediatric tumors are brain can-

cers, the most common solid tumors in children (Powers et

al. 1995; Stehbens, 1988). Often fatal, brain tumors are

classified according to their main atypical cell type, with

their symptoms depending largely upon their location (Cohen

& Packer, 1992; Stehbens, 1988). Brain tumors are often

classed in accordance with their location relative the ten-

torium or base of the brain (Baron et al. 1995). Subtento-

rial tumors of various pathologies are characterized by

symptoms of elevated intracranial pressure, such as head-

ache, irritability, nausea, and vomiting (Stehbens, 1988).

Types of subtentorial tumors include medulloblastoma and

brain stem gliomas, which both have very poor long term sur-

vival rates (i.e., typically under 20% at 5 years post diag-

nosis) (Cohen & Packer, 1992; Shiminski-Maher & Shields,

1995). Most frequently occurring in the subtentorial re-

gion, ependymomas typically have a better prognosis than the

aforementioned tumors (Cohen & Packer, 1992; Shiminski-Maher

& Shields, 1995). Visual changes, endocrine pathologies,











and hydrocephalous characterize midline tumors. The most

common kind of midline tumors, craniopharyngiomas have a

good prognosis if they are totally rejected (Cohen & Packer,

1992). Unfortunately, resection of these tumors can some-

times result in very serious neurological and endocrine com-

plications (Cohen & Parker, 1992; Shiminski-Maher & Shields,

1995). Lastly, symptoms of various supratentorial tumors

can include hemiparesis, visual field problems, seizures,

and endocrine problems (Shiminski-Maher & Shields, 1995;

Stehbens, 1988). Roughly 80% of supratentorial tumors, such

as most astrocytomas, are benign. However, anaplastic as-

trocytomas and glioblastomas are malignant types which are

highly virulent (Shiminski-Maher & Shields, 1995).

Arising from neural crest cells and first occurring in

the abdomen, chest, cervical, and pelvic areas, neuroblas-

toma is a cancer of the sympathetic nervous system that can

metastasize to the brain (Miller et al. 1994; Nemes & Dona-

hue, 1994; Stehbens, 1988). Individuals with neuroblastoma

often exhibit flu-like symptoms (Nemes & Donahue, 1994).

Wilm's tumor and hepatoblastoma are the most common renal

and liver tumors effecting children, respectively (Nemes &











Donahue, 1994; Stehbens, 1988). Children with kidney and

liver tumors most frequently present with either increased

abdominal girth or a mass in the abdominal region (Nemes &

Donahue, 1994; Stehbens, 1988). Hodgkins Disease and other

lymphomas, which are typically characterized by an enlarge-

ment of the lymph nodes, are also relatively common cancers

in childhood (Stehbens, 1988). A soft tissue cancer often

seen in childhood is rhabdomyosarcoma, which usually occurs

in the head and neck area in the form of a mass (Stehbens,

1988). Lastly, the bone cancers most frequently seen in

children are Osteogenic sarcoma and Ewings sarcoma (Miller

et al. 1994; Stehbens, 1988). Pain and a growth at the tu-

mor site are some of the common symptoms of bone tumors

(Stehbens, 1988).

Detection and Treatment of Childhood Cancer

Unlike many adult cancers, survival rates from the ma-

jority of childhood cancers are not significantly increased

by early detection (Stehbens, 1998). However, many pediat-

ric malignancies are more amenable to treatment than adult

malignancies (Miller et al. 1994). The type of cancer and

the child's likelihood of surviving the illness are related,











in part, to the child's age at disease onset (Miller et al.

1994; Nemes & Donahue, 1994; Stehbens, 1988). Most pediat-

ric malignancies are first diagnosed between birth and 4

years of age (Stehbens, 1988). The most common types of

cancers among young children are acute lymphoblastic leuke-

mia (ALL), neuroblastoma, Wilm's tumor, and hepatoblastoma

(Miller et al. 1994; Stehbens, 1988). After age 5, the

rates of bone cancers and lymphomas gradually increase such

that by age 20, the most frequent kinds of cancer are carci-

nomas rather than the sarcomas that predominate in childhood

(Miller et al. 1994; Stehbens, 1988). Prognosis is usually

worse if individuals are diagnosed with a cancer that is

atypical for their age group or if the disease has reoc-

curred (Cincotta, 1993; Nemes & Donahue, 1994; Stehbens,

1988).

The majority of pediatric cancers are treated by com-

bining chemotherapy with radiation, surgery, and, in more

extreme cases, bone marrow transplantation or BMT (Stehbens,

1988). Both chemotherapy and radiotherapy are designed to

kill the most rapidly metabolizing cells in the body, which

include, but is not limited to, cancer cells (Stehbens,











1988). Chemotherapy involves the administration of drugs

aimed at destroying or, at a minimum, controlling the repro-

duction of malignant cells (Baron, Fennell, & Voeller, 1995;

Stehbens, 1988). Radiotherapy consists of directing radia-

tion to diseased areas and to regions in the body where the

cancer has a propensity to metastasize (Baron et al. 1995).

Surgery entails the removal of the tumor/diseased-stricken

region (Baron et al. 1995; Stehbens, 1988). Unfortunately,

many of these interventions have aversive components (i.e.,

frequent injections) and both short-term and long-term side

effects (i.e., nausea and changes in physical appearance)

that can are often more painful and distressing than the

disease itself (Ellis & Spanos, 1994; Jay, 1988; Zelter,

1994).

Typically limited to treatment for highly malignant or

recurrent cancers, BMT most often involves exposure to very

high doses of chemotherapy and radiation (Stehbens, 1988).

Resulting in destruction of the immune system, these treat-

ments would be fatal if new bone marrow was not infused into

and accepted by the patient (Stehbens, 1988). Because it

has a lengthy recovery time as well as extensive periods of









11

isolation, BMT places children at a relatively high risk for

social difficulties (Powers et al. 1995).

The treatment regimen utilized to combat cancer is de-

pendent upon the type, location, and stage of the disease

(Jay & Dolgin, 1989; Stehbens, 1988). For example, ALL is

usually treated with chemotherapy; CNS radiation is often

used in conjunction with the chemotherapy if the child is

older than 3 years of age and there is a likelihood of CNS

spread of the cancer (Baron et al. 1995; Stehbens, 1988).

Survival rates for ALL are said to be approaching 70% (Mil-

ler et al. 1994; Stehbens, 1988). On the other hand, ANLL

and CML are much rarer and typically more deadly than ALL

(Miller et al. 1994; Stehbens, 1988). In fact, despite the

use of intensive treatment regimens, ANLL has among the

worst survival rates for childhood malignancies at 23%

(Miller et al. 1994).

The majority of solid tumors are treated through the

use of surgery to excise the tumor, followed by chemotherapy

and/or radiation if the disease is in relatively advanced

state at time of diagnosis (Cohen & Packer, 1992; Nemes &

Donahue, 1994; Shiminski-Maher & Shields, 1995; Stehbens,









12

1988). A staging system ranging from 1, limited disease, to

4 or 5, extensive disease, is used to classify the severity

of many of cancers, such as neuroblastoma, Wilm's tumor, and

lymphomas. For example, because diagnosis often fails to

occur until after the cancer reaches an advanced state, neu-

roblastoma frequently has a poor prognosis (Nemes & Donahue,

1994). Survival rates are higher if the neuroblastoma is at

an early stage, the patient is less than one year of age at

the time of diagnosis, the cancer has not metastasized, and

the disease did not arise in the abdominal region (Nemes &

Donahue, 1994; Stehbens, 1988). On the other hand, progno-

sis for Wilm's tumor is generally much better than that of

neuroblastoma (Miller et al. 1994; Stehbens, 1988). With

the outcome improving substantially during the past 15 to 20

years, children with early stage, nonmetastic, and favorable

histology Wilm's tumors have a 90 to 95% cure rate (Nemes &

Donahue, 1994; Stehbens, 1988). When diagnosed in an early

stage, the prognosis for those with Hodgkins disease is also

highly favorable with 80% of such persons being alive 10

years after diagnosis (Stehbens, 1988).











Although relatively rare when compared to other can-

cers, liver tumors are among the most deadly pediatric ma-

lignancies (Nemes & Donahue, 1994). Cure is limited to

cases in which there is a complete resection of the tumor

(Nemes & Donahue, 1994). Furthermore, only about 50% of the

patients survive more than 5 years even with the addition of

chemotherapy and radiation (Nemes & Donahue, 1994). Simi-

larly, bone cancers, such as Osteogenic sarcoma and Ewings

sarcoma, are relatively uncommon in children, particularly

in those younger than ten years of age (Stehbens, 1988).

Treatment for bone cancer typically entails removal of the

diseased area, which may necessitate limb amputation, fol-

lowed by intensive doses of chemotherapy and radiation.

Like many other cancers, prognosis is enhanced if the tumor

is relatively small and has not metastasized to other bones

or regions of the body. Lastly, children with rhabdomyosar-

coma are generally considered cured if they are alive two

years after diagnosis (Stehbens, 1988). Prognosis for pa-

tients with rhabdomyosarcoma is improved if the disease is

detected when in an early stage and first occurs before 5

years of age (Stehbens, 1988).











Coping with Pediatric Cancer

Early studies of coping in pediatric oncology were

based on pathological models of coping, which assume that

children with cancer are at risk for significant psychopa-

thology (Kupst, 1994). With their emphasis on adjustment

difficulties, pathological models left minimal opportunity

for examining healthy coping (Kupst, 1994). An example of a

pathological coping model used in pediatric oncology is the

grief-loss model of coping. This theory is focused on the

stages of parental grieving over their child's death, which

was believed to be inevitable (Kupst, 1994). Indicating that

the majority studies conducted from the grief-loss perspec-

tive were scientifically unsound, Kupst (1994) stated that

such models were proven incorrect.

The majority of theories currently used in attempts to

explore coping within the pediatric oncology population are

based on normative models (Kupst, 1994). Normative models

view children with illnesses such as cancer as normal indi-

viduals in an unusual and stressful situation (Kupst, 1994).

One of the most popular normative models of coping is Laza-

rus and Folkman's (1984) stress-coping theory (Kupst, 1994).










Although initially developed from studying the coping of

adult patients with various medical illness, the stress-

coping model has been applied to ill children in recent

years (Kupst, 1994). Rather than focusing on coping as a

trait, the stress-coping model is a process approach which

emphasizes the ideas that coping is dynamic, changing, and

context dependent (Kupst, 1994; Somerfield & Curbow, 1992).

According to the stress-coping model, coping strategies

themselves are not good or bad. Instead, the value of cop-

ing methods is assessed by determining the extent to which

they are effective at reducing and managing stress in a

given situation (Kupst, 1994).

Two coping models that have been used with chronically

ill children are Varni and Wallander's Disability-Stress

Coping Model and Thompson's Transactional Stress and Coping

Model (Wallander & Thompson, 1995). In the former coping

model, a chronic illness is perceived of as a chronic strain

that necessitates frequent readjustment and interferes with

normal role activities (Varni, Katz, Colegrove, & Dolgin,

1996). The interactions among risk factors (e.g., stress

associated with the disease itself as well as typical life










experiences) and resistance factors (e.g., intrapersonal,

social-ecological, and stress-processing characteristics of

children and families) help determine how people process and

cope with stressful events, including serious illnesses such

as cancer (Varni et al. 1996; Wallander & Thompson, 1995).

In a similar vein, Thompson's coping model sees cancer as a

potential stressor to which a child and his or her family

need to adapt, with adjustment being determined by the

transactions among biomedical, developmental, and psycho-

logical processes (Wallander & Thompson, 1995).

Congruent with the above models, several authors state

there is great variability in adjustment to cancer and its

accompanying treatment (Somerfield & Curbow, 1992; Spirito,

et al. 1991; Stehbens, 1988). In fact, Stehbens (1988) re-

ports that there is no typical patient, usual response to

treatment, or best type of coping. Consequently, it is im-

portant to have individualized care (Cincotta, 1993). Given

than many pediatric oncology patients have a relatively high

probability of exhibiting at least transient emotional symp-

toms during their illness, ongoing assessment of the child









17

and his or her family is crucial to maximizing adaptive cop-

ing (Baum & Baum, 1989; Cincotta, 1993; Noll & Kazak, 1997).

Variables associated with good coping or adjustment in-

clude a low level of concurrent stressors, financial secu-

rity, good familial support, a high degree of family cohe-

sion, and a history of previous effective coping (Brown et

al. 1992; Drotar, 1997; Hill et al. 1997; Kupst, 1994; Mor-

ris et al. 1997; Varni et al. 1996). Research has consis-

tently demonstrated that low levels of social support (i.e.,

perceived or actual positive regard expressed by others),

lack of communication with respect to diagnosis, a history

of poor coping, parental (especially maternal) distress, a

central nervous system (CNS) malignancy, and treatment with

intracranial radiation are associated with poorer outcomes

(Baum & Baum, 1989; Brody, 1991; Drotar, 1997; Duffner & Co-

hen, 1991; Frank, Blount, & Brown, 1997; Hill et al. 1997;

Kazak & Barakat, 1997; Kupst, 1994; Kupst et al. 1995; Last

& vanVeldhuizen, 1996; Sawyer et al. 1998; Stehbens, 1988;

Varni, Katz, Colegrove, & Dolgin, 1994).

Although the evidence is not as strong as that for the

aforementioned variables, other factors such as concurrent









18

stressors, low socioeconomic status, and functional impair-

ment, also have been found to increase the probability of

adjustment problems (Frank et al. 1997; Hockenberry-Eaton &

Cotanch, 1989; Kupst, 1994; Kupst et al. 1995; Mulhern,

1989; Varni, Katz, Colegrove, & Dolgin, 1994). Age at diag-

nosis also appears to have an influence on adjustment, but

its effect varies across studies (i.e., some say it is bet-

ter to be diagnosed when younger while others say it is bet-

ter to be diagnosed when older) (Kazak and Meadows, 1989;

Kupst et al. 1995; Mulhern, 1989). However, most research

does indicate that children under the age of 5 are most sus-

ceptible to the negative effects (e.g., decreased intelli-

gence, achievement, and memory) of cranial radiation and, to

a lesser extent, CNS chemotherapy (Eiser, 1998; Powers et

al. 1995).

In summary, the cancers afflicting children are quite

varied and include leukemias, brain tumors, neuroblastoma,

organ tumors (e.g., kidney and liver), lymphomas, soft tis-

sue malignancies, and bone tumors (Miller et al. 1994; Steh-

bens, 1988). Factors which influence a pediatric cancer pa-

tient's prognosis are disease type, age at onset, and tumor








19

histology (Nemes & Donahue, 1994; Stehbens, 1988). The most

common methods for treating pediatric cancers are chemother-

apy, radiation, surgery, and bone marrow transplantation

(Stehbens, 1988).

Despite the suggestion of significant psychological

difficulties in early psychooncology research, the results

of the majority of more recent studies indicates that most

children with cancer cope relatively well with their disease

(Kupst, 1994). However, numerous cancer variables (e.g.,

type of malignancy and type of treatment) and subject varia-

bles (e.g., concurrent stressors and level of social sup-

port) appear to affect the psychological functioning of

children with cancer (Baum & Baum, 1989; Duffner & Cohen,

1991; Kupst, 1994; Kupst et al. 1995; Mulhern, 1989; Spirito

et al., 1991; Stehbens, 1988; Varni et al. 1994). There-

fore, the frequent evaluation of the pediatric cancer pa-

tient and his or her family is vital to decreasing the pro-

bability of adjustment and coping problems (Baum & Baum,

1989; Cincotta, 1993; Noll & Kazak, 1997).











Social Development

Defining Social Development

Social development can be defined as age related

changes in a individual's interactions with others (Pettit,

1992). Social development initially occurs within the con-

text of the family, which is the source of the first rela-

tionships and social conflicts that a person has with others

(Berk, 1989). Beginning at an early age, these reciprocal

and bidirectional interactions among children, parents, and

siblings are supplemented by relationships with people out-

side the familial system, such as contact with peers and

school experiences (Berk, 1989). As children grow older,

peers tend to have an increasing influence upon their behav-

ior; however, the peer group's values tend to be compatible

with important adult values (Berk, 1989). Successful so-

cialization during childhood is vital to adult adjustment

(Parker & Asher, 1987).

Theories of Social Development

Historically, virtually all theoretical orientations

have theories of social development (Miller, 1989; Pettit,

1992). For example, Erik Erikson, a neo-Freudian, proposed










8 stages of psychosocial development occurring throughout

the life-span (Berk, 1989; Miller, 1989). Each of these

stages is characterized by a psychological conflict that

arises from both maturational forces and societal expecta-

tions (Berk, 1989; Miller, 1989; Pettit, 1992). Erickson

emphasized that normal development must be understood in re-

lation to each child's life situation and cultural context

(Berk, 1989).

At the present time, social learning theory and social

information processing theory provide some of the most pop-

ular explanations of social development (Miller, 1989; Pet-

tit, 1992). Although the origins of social learning theory

were attempts to combine learning theory (i.e., operant and

classical conditioning) with psychoanalytic ideas, modern

social learning theory is primarily concerned with describ-

ing how all behavior, including social behavior, can be ex-

plained in terms of reciprocal determinism. Reciprocal de-

terminism can be defined as the belief that the environment

(which includes examples of and contingencies for behavior),

the person (which includes cognitive factors), and the per-

son's behavior are interdependent and interact to determine








22

behavior (Grusec, 1992; Miller, 1989). Modern social learn-

ing theory is most frequently associated with Albert Bandura

(Grusec, 1992, Miller, 1989; Pettit, 1992). While acknowl-

edging that conditioning principles influence behavior, Ban-

dura has chosen to focus on the ways in which observational

learning (i.e., learning through watching others) and its

cognitive components of attention, retention, production,

and motivation, influence behavior (Grusec, 1992; Miller,

1989). Whether or not an observed behavior is reproduced is

largely determined by an individual's level of self-efficacy

(Bandura, 1977; Grusec, 1992; Miller, 1989). Self-efficacy

consists of an individual's belief that he or she can suc-

cessfully execute a behavior which he or she believes will

eventually result in specific, desired outcomes (Bandura,

1977). It should be noted that in recent years social learn-

ing theory was been renamed social cognitive theory due to

the increasing emphasis on the role that cognition has in

affecting behavior (Grusec, 1992; Miller, 1989).

Numerous similarities exist between social cognitive

theory and social information processing theories. For in-

stance, both types of theories agree that the interaction











between cognitive factors (e.g. memory, attention, and be-

havioral enactment skills) and environmental experience is

the primary determinate of social development and social be-

havior (Pettit, 1992; Miller, 1989). Although the gap be-

tween these theoretical approaches has narrowed in recent

years, social information processing theories have generally

been more concerned with individuals' reasoning about their

social world, particularly how social information is proc-

essed, than has social cognitive theory (Grusec, 1992; Pet-

tit, 1992). in accordance with information processing the-

ory, social information processing theorists are primarily

concerned with the flow information through the cognitive

system and how the sequence of mental operations changes the

social information from input to output (Matlin, 1989; Mill-

er, 1989).

One relatively popular social information processing

theory is the Interpersonal Negotiation Strategy Model of

Selman and Yeates (1989). According to this model, social

development arises from changes in a person's interpersonal

negotiation strategies (INS) and role taking abilities as

they grow older (Yeates, Schultz, & Selman, 1991; Selman &








24

Yeates, 1989). These authors define INS as the methods peo-

ple use in their attempts to resolve conflicting goals in

social situations (Yeates et al. 1991; Yeates & Selman,

1989). A series of social information processing steps

(SIPS) result in the person deciding on an INS for that par-

ticular social situation (Yeates et al. 1991; Yeates & Sel-

man, 1989). The SIPS are (1) defining the problem (2) gen-

erating strategies (3) selecting and implementing strategies

and (4) evaluating outcomes (Yeates et al. 1991; Yeates &

Selman, 1989). Furthermore, what a person does at each of

these SIPS depends upon the person's role taking abilities,

which are developmentally determined. These role taking

abilities range from (0) impulsive (ages 3 to 6)-use of

physical means to resolve differences, (1) unilateral (ages

5 to 9)-willful one-way orders or willess submission because

of an inability to consider more than one perspective simul-

taneously, (2) reciprocal (ages 7 to 12)-try to satisfy both

persons' goals, to (4) collaborative (ages 10 to 12 and up)-

each person modifies his or her goals such that they try to

achieve a mutual goal (Selman et al. 1991; Selman & Yeates,

1989). In the INS model, social development is evidenced by









25

individuals' becoming increasingly able to see themselves in

their broader social context and from multiple perspectives

(Selman & Yeates, 1989).


Table 1
Theories of Social Development

________________________Theories_______

Erickson Social Learning Interpersonal
Theories Negotiation
Strategies

Characteristic

reciprocal marginal yes yes
determinism

self efficacy no yes no

biological yes marginal marginal
emphasis

cognitive no yes yes
emphasis

SIPS no no yes

role taking no no yes
abilities _______________________











Social Competence

Defining and Studying Social Competence

Social competence and social development are related

phenomena. Since what is considered socially competent be-

havior depends upon a person's age, assessment of an indi-

vidual's level of social competence is linked to his or her

level of social development (Crick & Dodge, 1994; Yeates &

Selman, 1989). Social competence is said to arise from a

person's experiences in close relationships (Hartup, 1989).

Although there is no agreed upon definition of social compe-

tence, many authors indicate that there are two main com-

monalties across definitions and theories: (1) social compe-

tence involves social skills (i.e., the socially acceptable,

learned verbal and nonverbal abilities engaged in in social

contexts which elicit positive responses and inhibit nega-

tive ones) but is not limited to them and (2) social compe-

tence refers to the efficacy and adequacy of a person's so-

cial interactions (Dodge, 1989; Elliot & Gresham, 1993;

Gresham, 1998; Spirito, et al. 1991).

The most popular models of social competence, which

will be discussed shortly, note that cognitive processes,











especially SIPS, are vitally important for socially compe-

tent behavior (Cavell, 1993; Crick & Dodge, 1994; Selman &

Yeates, 1989). Cavell (1993) asserts that SIPS can be sepa-

rated into the three broad categories of encoding skills

(i.e., attending to and interpreting stimuli), decoding

skills (i.e., generating strategies), and enactment skills

(i.e., executing the chosen behavior and evaluating its ef-

fectiveness). A definition of social competence which con-

tains most of the characteristics described above is that of

Yeates & Selman (1989) who define social competence as:

knowledge, including the capacity for emotional con-
trol, that mediate behavioral performances in specific
contexts, which in turn are judged by self and others
to be successful and thereby increase the likelihood of
positive psychosocial adjustment (p.66).

In other words, social competence can be best conceptualized

as the possession of the age-appropriate social-cognitive

and behavioral skills necessary to meet ones' goals in so-

cial situations while simultaneously maintaining positive

relationships with other individuals.

Greenspan (1982) stated that there are three primary

approaches to studying social competence, namely the out-

come, content, and skills approaches. The outcome approach











is concerned with the ability of individuals to attain so-

cial objectives, such as having friends, doing adequately in

school, and having at least average peer status (Greenspan,

1982). Greenspan (1982) argues that outcome variables are

often good indicators of social status, but they do not tell

you the cause of the social problems. The content approach

consists of attempts to identify behavioral traits that are

associated with positive and negative social outcomes; exam-

ples of such traits include sociability, emotionality, and

social anxiety (Greenspan, 1982). It should be noted that

girls have been found to report more social anxiety than

boys (LaGreca & Stone, 1993). Lastly, the skill approach

involves studying a person's level of social awareness or

social intelligence, which Greenspan (1982) defined as one's

understanding of the interpersonal processes used to gain

social acceptance. The skill approach is comprised of the

three categories: (1) social sensitivity-the ability to ac-

curately label the meaning of a social event, (2) social in-

sight-the ability to understand the processes underlying so-

cial events and make evaluative judgments about them (i.e.,

why is something happening in a specific social situation),











and (3) social communication-the ability to understand how

to intervene effectively in social situations (Greenspan,

1982). Examples of social sensitivity, social insight, and

social communication are role taking, social comprehension,

and social problem solving, respectively (Greenspan, 1982).

Theories of Social Competence

The three most prominent theories or models of social

competence are the Interpersonal Negotiation Strategy Model

of Selman and Yeates (1989), the Social-Information Process-

ing Model of Crick and Dodge (1994), and the Tri-Component

Model of Cavell (1990).

The majority of the basic components of Selman and

Yeates' (1989) INS model were described in the social de-

velopment section. To briefly summarize, these authors em-

phasize that the methods be which individuals resolve dif-

ferences in social situations (i.e., their interpersonal ne-

gotiation strategies or INS) are linked to developmental

changes in role-taking abilities; these changes can report-

edly be observed by studying differences in the four SIPS

across age groups (Selman & Yeates, 1989). Yeates and Sel-

man (1989) assert that although role taking abilities are








30

generally at one of the four levels, these can vary depend-

ing upon the person's experience with the particular situa-

tion in question, which is reflected in their database of

information. Consequently, they view social competence as

domain specific and, therefore, claim that one must be care-

ful to avoid making unfounded generalizations about social

behavior based on information from one or even a few social

settings (Yeates & Selman, 1989). Advancement in role tak-

ing abilities is said to be most likely to occur when the

individual attempts to determine why his or her lower level

strategies failed to produce desired results in a given so-

cial situation (Yeates and Selman, 1989). Indicating that

social competence is ultimately defined in terms of long-

term adjustment rather than short-term social functioning,

Selman & Yeates (1989) say that other theories, including

Crick & Dodge's (1994), are inadequate because they do not

give a satisfactory account of the means of developmental

changes in social reasoning. In two studies, Yeates et al.

(1991) used an interview format to obtain peer status and

INS levels from of a sample of elementary and middle school

students. The INS level of each child was calculated by








31

analyzing the subject's answers (Yeates et al. 1991). These

authors reported that their findings supported their asser-

tions that there are age differences in INS, that INS are

often situation specific, and that INS are related to social

competence (Yeates et al. 1991).

Although the models of social functioning exposed by

Yeates and Selman and Crick and Dodge (1994) include discus-

sion of information processing in social situations, the

latter model places considerably more emphasis on informa-

tion processing. According to Crick and Dodge (1994), each

individual has biologically based capabilities as well as a

database of past experience, which they continually consult

while interpreting a social situation. The six SIPS in so-

cial situations are (1) encoding cues, (2) interpreting the

cues, (3) clarifying and selecting goals for the situation,

(4) constructing responses, (5) evaluating responses and se-

lecting the one with the most positive evaluation, and (6)

behavioral enactment (Crick & Dodge, 1994). They indicate

that although described as sequential, these SIPS are really

cyclical and actually occur simultaneously (Crick & Dodge,

1994). Crick and Dodge (1994) acknowledge the likelihood of









32
increased speed and automaticity of processing as individu-

als get older; however, unlike Yeates & Selman (1989), they

do not clearly specify the existence of developmentally-

based differences in social reasoning abilities. Dodge and

Price (1994) cite numerous studies that appear to be suppor-

tive of their six SIPS. In particular, they provide evi-

dence of problems in various SIPS among children with social

difficulties (Dodge & Price, 1994). For example, they indi-

cate that socially incompetent children are less attentive

to social cues, access fewer competent responses, and are

worse at enacting responses when compared to children with

average or above average peer status (Dodge & Price, 1994).

The third and last theory of social competence that

will be discussed is Cavell's (1990) Tri-Component Model of

social competence. As noted in the section defining social

competence, Cavell (1990) separates social information pro-

cessing into the three areas of encoding skills, decision

skills, and enactment skills. Similar to Selman and Yeates'

(1989) claim that social competence is situation specific,

Cavell (1990) emphasizes the importance of focusing on typi-

cal behavior on relevant tasks rather than on behavior in











artificial situations. According to Cavell (1990), social

competence is hierarchically arranged. Ranging from lowest

to highest, the three components of social competence are

(1) social skills-the specific abilities/social information

processing skills that allow a person to perform competently

on a social task, (2) social performance-the degree to which

a person's responses meet socially valid criteria in given

situations, and (3) social adjustment-the extent to which a

person is achieving socially determined, developmentally ap-

propriate goals. Social adjustment is evaluated by looking

at the products of social functioning, such as global judg-

ments of competence and level of peer acceptance (Cavell,

1990). Cavell (1990) states that the identification of

children at risk for social functioning difficulties is most

efficient if the researcher or clinician first assesses the

child's social adjustment in a broad range of social con-

texts. If social adjustment problems were detected, such as

low peer status, one would then proceed to conduct a situa-

tional analysis of the problematic situations in order to

determine the child's deficits in the information processing

steps (Cavell, 1990). The Tri-Component model suggests that









34

investigators should be careful to avoid basing judgments of

social competence on only a portion of relevant data, such

as using measures that assess social adjustment but not so-

cial performance or social skills (Drotar, Stein, & Perrin,

1995).

Table 2 presents a summary comparison of the major com-

ponents of these three models.




Table 2
Theories of Social Competence

Characteristic Models

Cavell Crick & Dodge Yeates & Selman
(1990) (1990) (1989)

IPS Yes Yes Yes

Directionality- Both Circular Both
linear or circular

Developmental No No Yes
Emphasis

Database No Yes Yes











Social Functioning

Friendship and Peer Relations in Childhood

Relationships with others are a primary component of

and have a strong influence upon social functioning. Having

several important functions in our lives, relationships with

other individuals, including both friends and the overall

peer group, have an impact on both short and long term ad-

justment (Coie & Cillessen, 1993; Parker & Asher, 1987;

Spirito et al. 1991). Relationships with others are one of

the primary means through which children acquire social

knowledge and enhance social skills (Furman & Robbins, 1985;

Hartup, 1989).

While friendships and peer relations provide similar

types of benefits to individuals, these two types of inter-

actions are not equivalent (Parker & Asher, 1987). For ex-

ample, children can be accepted by their peer group but have

few close friends or have several close friends but be re-

jected by their peer group (Parker & Asher, 1987; Furman &

Robbins, 1985). Both peer relations and friendships become

increasingly abstract, stable, and complex as children grow

older (Erwin, 1993a; Hartup, 1989). However, when compared









36

to general peer relations, friendships are better sources of

intimacy, loyalty, companionship, reciprocity, and affection

(Furman & Robbins, 1985; Hartup, 1989; Bierman & Montminy,

1993). On the other hand, since feeling included is depend-

ent upon the existence of a group and a friendship typically

involves a limited number of people, peer relationships are

superior to friendships in providing a sense of inclusion

(Furman & Robbins, 1985).

Although there are numerous ways to study children's

relationships with their peers, the most common means is to

measure peer acceptance (LaGreca, 1993). Children with low

peer status/low levels of peer acceptance are typically de-

scribed as either rejected (i.e., actively disliked), ne-

glected (i.e., neither liked nor disliked), or controversial

(i.e., both strongly disliked and liked) (Volling, MacKin-

non-Lewis, Rabiner, & Baradaran, 1993). By far the most

frequently studied group of low status children, rejected

children, can be further divided into the categories of ag-

gressive, withdrawn, and undifferentiated (Coie & Cilles-

sen, 1993). The results of several longitudinal studies

suggest that among low status children, aggressive-rejected











children, who have been found to be more likely than their

nonaggressive peers to make hostile interpretations of am-

biguous situations, have the poorest long-term outcomes and

exhibit the highest degree of behavior problems, especially

externalizing ones (DeRosier, Kupersmidt, & Patterson, 1994;

Hymel, Rubin, Rowden, & Lemare, 1990; Kupersmidt & Patter-

son, 1991; O'Neil, Welsh, Parke, Wang, & Strand, 1997; Tay-

lor, 1989; Webster-Stratton & Lindsay, 1999). O'Neil et al.

(1997) found that children who were stably rejected (i.e.,

rejected for two or more consecutive years) did worse so-

cially, behaviorally, and academically than those who were

transiently rejected (i.e., rejected one year but not the

next).

Volling et al. (1993) and Newcomb, Bukowski, and Pattee

(1993) note that aggression alone is insufficient for peer

rejection. Instead, a child must be aggressive and have

deficits in prosocial skills. Prosocial skills include be-

ing cooperative and friendly and having good social problem

solving skills and group entry abilities (Berk, 1989). Con-

sequently, controversial children appear to do reasonably

well socially because their aggressive behavior is at least









38

partly attenuated by their typically average level of proso-

cial and cognitive skills (Newcomb et al. 1993).

Additional research has documented that all types of

low peer status children have deficits in their social in-

formation processing skills (Brochin & Wasik, 1992; Dodge &

Price, 1994; Erwin, 1994; Kurdek & Krile, 1982; Mott &

Krane, 1994). In particular, these authors note that the

solutions developed by low status youth for social situation

are often less competent (i.e., achieving goals in socially

undesirable ways) and less effective (i.e., not achieving

goals in the situation) when compared to solutions develop-

ed by their average status and high status peers.

Assessment of Social Functioning

According to Foster, Inderbitzen, and Nagle (1993) and

Oglivy (1993), several different methods can be used to as-

sess social functioning. These authors state that these as-

sessment techniques can be classified into four broad cate-

gories: direct observation, social problem solving, assess-

ment by others, and self-report. Direct observation has the

advantage of enabling the clinician to examine the contin-

gencies that are likely maintaining behavior; however, there











are several limitations to direct observation including

relatively low levels of experimental control, obtrusive-

ness, dependence upon the natural occurrence of the behav-

ior, sampling problems, and the fact that this method does

not allow the investigator to determine the exact nature of

the behavior problems (Foster et al. 1993; Oglivy, 1993).

Analogue tasks, which are contrived situations designed to

elicit the responses of interest, can overcome some of the

drawbacks of direct observation (Foster et al. 1993; Oglivy,

1993).

Although their reliability and validity are often ques-

tioned, social problem-solving techniques involve attempts

to formally assess children's social problem solving skills

through analyzing the child's responses to hypothetical so-

cial dilemmas (Oglivy, 1993). Self-report techniques con-

sist of the child evaluating his or her own behavior through

the completion of questionnaires or by answering interview

questions (Foster et al. 1993; Oglivy, 1993). Foster et al.

(1993) state that judgments of social functioning should not

be based solely on self-report since self-report measures









40

often have very global questions and self observation can be

poorly correlated with behavior.

Evaluations by others are a common technique for as-

sessing social functioning (Foster et al. 1993). Sociomet-

ric methods involve teachers, parents, or peers rating chil-

dren on their ability to fulfill certain roles. Sociometric

techniques look at peer status along the two dimensions of

(1) social preference/social likeability or the degree to

which children are liked or disliked by peers and (2) social

impact/social salience or the degree to which youth are no-

ticed by their peers (Newcomb et al. 1993). Although these

methods are face valid and relatively easy to complete, so-

ciometric techniques can lead to negative labeling, are of-

ten inaccurate with younger children, and they do not tell

you the source of the child's peer difficulties (Bierman &

Montminy, 1993). Unfortunately, sociometric measures are

often difficult to obtain in the typical clinical setting.

Lastly, social skills, a component of social functioning,

are typically assessed via self-report or evaluation by oth-

ers (Foster et al. 1993; Oglivy, 1993).











Interventions for Children with Social Difficulties

In a metanalytic review of social competence training

studies, Beelman, Pfingsten, & Losel (1994) indicated that

the four most commonly used techniques for improving social

competence are (1) social problem solving-learning to gener-

ate solutions and use means-end thinking, (2) role taking-

focusing on the development of social perspective taking,

(3) self-control training-enhancing the child's ability to

evaluate solutions prior to enactment, and (4) social skills

training. The first three types of interventions have been

found to have significant, relatively small short-term ef-

fects and marginal long-term effects (Beelman et al. 1994;

Schneider, 1992). Several authors note that social compe-

tence training techniques that have a relatively strong cog-

nitive emphasis, such as social problem solving and self-

control training, are less effective with children under 7

years of age (Beelman et al. 1994; Elliot & Gresham, 1993;

LaGreca, 1993; Oglivy, 1994; Schneider, 1992).

Social skills training (SST) is by far the most common

method for modifying problematic social functioning (Beelman

et al. 1994; Elliot & Gresham, 1993; LaGreca, 1993; Oglivy,











1994; Schneider, 1992). The assumptions in most SST pro-

grams are (1) that children who have problems in social re-

lations lack appropriate social skills; (2) that it is pos-

sible to teach social skills; and, (3) that children who

learn social skills will demonstrate improvements in their

social functioning (Gresham, 1998; Katz & Varni, 1993; Og-

livy, 1994). The four main types of SST interventions are

problem solving, contingency management (i.e., using operant

and classical conditioning methods), modeling (i.e., a so-

cial learning theory method in which the desired behavior is

demonstrated to the child), and coaching (i.e., a cognitive-

behavioral method consisting of verbal instruction followed

by practice and feedback) (Elliot & Gresham, 1993; Erwin,

1993b, Gresham, 1998; Oglivy, 1994).

Gresham & Elliot (1993) state that selection of the SST

method should be depend to some extent on whether the child

has a knowledge deficit (i.e., lacks the skills needed for

appropriate interactions) or a performance deficit (i.e.,

the inadequate application of knowledge and skills in social

situations). Most social skills difficulties are due to a

performance deficit (Gresham, 1998). SST programs seem to










work best if they are multifaceted (i.e., include several

sources of information and multiple intervention techniques)

as well as socially valid (i.e., extent to which targeted

behaviors are important to social functioning) (Gresham,

1998; Blonk, Prins, Sergeant, Ringrose, & Brinkman, 1996).

Coaching has been found to be the most effective method for

improving social functioning; however, it is considerably

less successful with children under the age of 7 (Elliot &

Gresham, 1993; Oglivy, 1994; Schneider, 1992). The diffi-

culties many children under the age of 7 have with coaching

is attributable to their level of cognitive functioning,

which does not yet contain the logical, abstract reasoning

capabilities and role taking abilities thought to be requi-

sites for cognitive techniques (Kinney, 1991).

Although SST programs are based on the idea that teach-

ing social skills will lead to improvements in social behav-

ior, this is not always the case (Elliot & Gresham, 1993;

LaGreca, 1993; Oglivy, 1993). One possible explanation for

the lack of change in peer status despite improved social

skills is group dynamics. Examples of such group dynamics

are the persistence of attributional biases, such as the











proclivity to view the behavior of low status peers nega-

tively even when presented with contradictory evidence, and

the tendency of peers to fail to reinforce low status peers

for prosocial behaviors (Coie & Cillessen, 1993; LaGreca,

1993; Volling et al. 1993). Procedures that can help coun-

teract group dynamics as well as increase the effectiveness

of SST include having peers participate in the intervention,

establishing behaviors that are likely to be maintained by

naturally occurring contingencies in the environment, and

providing training in skills which have social validity

(Gresham & Elliot, 1993; Oglivy, 1993). In addition, it

should also be noted that while rejected children have been

the most extensively studied subtype of low status youth,

withdrawn children appear to have the best response to all

types of social competence training (Elliot & Gresham, 1993;

Oglivy, 1994; Schneider, 1992). This finding is particu-

larly promising for those working with pediatric cancer pa-

tients since the most frequently observed social problems

within this population have been social isolation (Kupst

1994; Noll et al. 1990; Noll et al. 1993; Spirito et al.

1990).









45

In summary, relationships with others, including family

members, friends, and the peer group, strongly influence

both social functioning and psychological adjustment (Coie &

Cillessen, 1993; Parker & Asher, 1987; Spirito et al. 1991).

Children with poor peer relations have low levels of accep-

tance by their peers (LaGreca, 1993). Children who both

lack prosocial skills and are aggressive have the worst

prognosis among all low status youth (Coie & Cillessen,

1993; LaGreca, 1993; Newcomb et al. 1993; O'Neil et al.

1997). A wide variety of techniques exist for evaluating

the social functioning of children thought to be at risk for

social problems (Foster et al. 1993; Oglivy, 1994). These

assessment methods range from observations by others to

self-report measures (Foster et al. 1993; Oglivy, 1994).

Methods for modifying problematic social behavior include

social problem solving, role taking, self-control training,

and social skills training (Beelman, et al. 1994; Erwin,

1993b; Schneider, 1992). With success depending upon the

ability to counteract group dynamics, social skills training

has the largest effect sizes of.these intervention methods,

especially when non-cognitively oriented methods are used











with children under the age of 7 (Elliot & Gresham, 1993;

LaGreca, 1993; Oglivy, 1993; Schneider, 1993).

Research on Psychosocial Adjustment to Cancer

In recent years, numerous studies have been conducted

which attempt to examine psychosocial adjustment in pediat-

ric cancer patients. As both the short and long-term sur-

vival rates for many pediatric malignancies have improved,

studying the psychosocial adjustment of children with cancer

has taken on increased importance (Kupst, 1994; Rowland,

1989; Wallander & Thompson, 1995). The ultimate goal of

most psychosocial research is to try to identify variables

which influence an individual's quality of life, which can

be defined as the amount of satisfaction a person has with

his or her present life circumstances (Belec, 1992). The

past, expectations of the future, and the person's psycho-

logical, social, economic, and health status all have an im-

pact on quality of life (Belec, 1992).

The initial seminal work by Koocher and O'Malley (1981)

suggested that approximately 50% of childhood cancer survi-

vors experience at least mild psychological symptoms and, by

inference, adjustment problems (Kupst, 1994). However, the









47

majority of more recent studies imply that long-term adjust-

ment among pediatric cancer patients is generally adequate

(Kupst, 1994; Spirito et al. 1990). In fact, it should be

noted that the overall adjustment of cancer survivors has

been found to be similar or superior to the adjustment of

children with other chronic pediatric conditions (Lavigne &

Faier-Routman, 1992).

Several investigators have examined the social adjust-

ent of pediatric oncology patients. Spirito et al. (1990)

studied the social adjustment of cancer survivors initially

treated between 2 and 5 years of age. When assessed at 5 to

12 years of age, there were no significant differences when

compared to controls in terms of the cancer children's view

of their competencies. However, the authors did indicate

that the children with cancer reported greater isolation

than their healthy peers (Spirito et al. 1990). Kazak and

Meadows (1989) also examined the adjustment of pediatric

cancer survivors who were relatively young at diagnosis

(i.e., mainly during the preschool years). Ranging from 10

to 15 years of age, the children in this latter study did

not differ from test norms with respect to their report of










child behavior, perceived competence, family functioning,

and social support (Kazak & Meadows, 1989). Yet, it is

noteworthy that there was some indication that the avail-

ability of social support had decreased somewhat over time

(Kazak & Meadows, 1989).

Noll and colleagues have conducted several investiga-

tions into the social functioning of children with cancer

(Noll et al. 1990; Noll et al. 1992; Noll et al. 1993). The

primary measure in all three of these studies was the Revi-

sed Class Play or RCP, which is a measure that looks at the

ability of children to fulfill certain roles. Derived from

the responses, the three scales on the RCP are Sociability-

Leadership, Aggressive-Disruptive, and Sensitive-Isolated

(Noll et al. 1990; Noll et al. 1992; Noll et al. 1993). In-

volving children between 8 and 18 years of age, the sub-

jects' cancer status ranged from on active treatment (Noll

et al. 1992) to maintenance treatment/recent treatment ter-

mination (Noll et al. 1990) to off treatment (Noll et al.

1993). The results of all three studies documented no ele-

vations on aggression and some indications of social isola-

tion. The authors pointed out that despite the increased









49

levels of social isolation, there was no evidence of diffi-

culties with social acceptance, depression, or self-concept

(Noll et al. 1993).

In a more recent study, Noll et al. (1997) found no

differences in behavioral or academic adjustment between ALL

cancer survivors who received chemotherapy and radiation

versus those who received chemotherapy only. While contrary

to other research, the authors suggested that the lack of a

radiation effect may be due to the relatively low doses of

radiation received by the children (Noll et al. 1997).

Recent research by Vannatta and colleagues documented

some social differences between 8 to 16 year old BMT survi-

vors and classroom matched controls (Vannatta, Zeller, Noll,

& Koontz, 1998b). Specifically, the BMT children had fewer

friends and were described by their peers as more socially

isolated, less attractive, and less athletically compentent

than their healthy classmates (Vannatta et al. 1998b). Cra-

nial irradiation (CRT) was associated with higher levels of

social withdrawal and anxiety (Vannatta et al. 1998b). Sev-

eral other researchers have also found a positive relation-

ship among CRT, school/academic problems, and psychological











distress, but they indicate that these difficulties are

typically subclinical in nature (Adamoli et al. 1997; Hill

et al. 1998). Interestingly, intrathecal chemotherapy is

not associated with a significant decrease in academics de-

spite having contact with the CNS (Brown et al. 1998; Cope-

land, Moore, Francis, Jaffe, & Culbert, 1996).

Pendley, Dahlquist, and Dryer (1997) looked at the re-

lationship between body image and social adjustment among

adolescent cancer survivors and healthy controls. The can-

cer survivors engaged in half the number of social activi-

ties as their healthy counterparts (Pendley et al. 1997).

However, of greater concern was that children with cancer

who thought their illness had had a negative effect on their

physical appearance reported relatively high levels of lone-

liness and social anxiety (Pendley, et al. 1997).

Congruent with earlier studies, two group of research-

ers have found evidence of increased adjustment difficulties

among children who have survived brain cancer (Radcliffe,

Bennett, Kazak, Foley, & Phillips, 1996; Vannatta, Gart-

stein, Short, & Noll, 1998a). Although 6 to 18 year old

brain tumor survivors scored within the normal range on











self-report measures of depression, anxiety, and self con-

cept, their mothers reported increased social problems, de-

creased social competence, decreased school competence, and

decreased communication skills relative to test norms (Rad-

cliffe et al. 1996). The children did describe themselves

as less athletically competent than healthy youth (Radcliffe

et al. 1996). Vannatta et al. (1998a) used the Revised

Class Play (RCP), likeability ratings, and number of friends

in their effort to study the social functioning of 8 to 18

year old brain tumor survivors. Despite the fact that the

study participants represented the best medical outcomes

within the brain tumor survivor sample (i.e., primary school

placement was in a regular rather than special education

classroom), the brain tumor survivors still had fewer

friends and were more socially isolated than the healthy

controls (Vannatta et al. 1998a).

While children with newly diagnosed cancer have been

found to have a higher level of internalizing problems rela-

tive to healthy controls, these difficulties seem to dissi-

pate by one year post-diagnosis (Sawyer, Antoniou, Toogood,

& Rice, 1997; Sawyer et al. 1995). Consistent with previous









52

research, Varni et al. (1994) found that recently diagnosed

cancer patients had better self-esteem, less social anxiety,

and a lower level of psychological distress if they had a

higher level of social support. Katz and Varni (1993) de-

veloped a social skills program designed to address areas

thought to be important in adjustment of children with newly

diagnosed cancer; these three areas were teasing/name call-

ing, assertiveness, and social cognitive problem-solving.

Subsequently, Varni, Katz, Colegrove, and Dolgin (1993) dem-

onstrated that newly diagnosed cancer patients who partici-

pated in their social skills intervention reported higher

levels of social support and, according to parental report,

decreased behavior problems and improved school competence

at nine month follow-up. In contrast, the controls, who

were enrolled in a standard school reintegration program,

failed to show similar improvements. The findings of Varni

et al. (1993) suggest that interventions aimed at improving

the adjustment of children with cancer can be successful.

However, there are some shortcomings or inadequacies in

the current studies of psychosocial adjustment among pediat-

ric oncology patients. One criticism of presently available











studies is the frequent failure to take into account indi-

vidual characteristics, such as age or stage of illness,

which may influence outcome (Armstrong, 1995; Drotar, 1994,

Kupst, 1994; Spirito et al. 1991). For example, due to sam-

ple size limitations, developmental issues have been largely

ignored in research (Armstrong, 1995; LaGreca, 1990; Siegel,

1990; Spirito et al. 1991). Because younger children have

been found to be exhibit more distress than older children,

failure to include developmental issues in studies may have

resulted in an overly optimistic picture of the adjustment

of younger patients, especially during the treatment phases

of their illness (Varni & Katz, 1987). In fact, the exclu-

sion of many subject and disease variables from investiga-

tions has increased the probability that some researchers

have made incorrect interpretations of their findings (Arm-

strong, 1995; Drotar, 1994; Kupst, 1994).

Another problem in the psychosocial adjustment research

is the questionable appropriateness of measures frequently

used to assess the psychological functioning of pediatric

oncology patients (Siegel, 1990; Drotar et al. 1995; Spirito

et al. 1991). For instance, Drotar et al. (1995) suggest











that the Child Behavior Checklist (CBCL), a parent-report

measure designed to screen for psychopathology, may yield

inaccurate information when used with chronically ill chil-

dren. In particular, some of the indices of social func-

tioning on the CBCL, such as involvement in various activi-

ties, may underestimate the social competence of children

with cancer do to disease-related restrictions in these ar-

eas (Drotar et al. 1995). Drotar et al. (1995) note that

children with cancer may demonstrate their social competence

in ways not measured by the CBCL, such as knowledge about

activities rather than participation. In addition, the

CBCL's relative insensitivity to less serious difficulties

(i.e., mild affective symptomatology and marginal adjustment

issues), which are the most frequent type of problem experi-

enced by children with cancer, may result in a failure to

detect problems worthy of intervention (Drotar et al. 1995).

In summary, the majority of recent studies suggest that

most children who survive cancer do not experience signifi-

cant adjustment difficulties (Kupst, 1994). The most com-

monly documented social difficulty among pediatric oncology

patients is an increased level of social isolation relative








55

to their peers (Noll et al. 1990; Noll et al. 1993; Spirito

et al. 1990; Vannatta et al. 1998a; Vannatta et al. 1998b).

Social skills training has been found to be effective in de-

creasing problematic behavior and increasing social support

in newly diagnosed pediatric cancer patients (Varni et al.

1993). Unfortunately, developmental issues, stage of ill-

ness, and measure appropriateness have been largely ignored

in many investigations (Armstrong, 1995; Drotar et al. 1995;

Kupst, 1994; Varni & Katz, 1987).

Rationale and Hypotheses

While the currently available research has greatly ex-

panded our understanding of psychosocial adjustment to can-

cer during childhood, there is still much more that needs to

be learned. Given children with cancer have a relatively

high probability of experiencing social difficulties due to

the numerous short-term and long-term alterations in func-

tioning associated with their diseases, programs addressing

social functioning within this population appear to be war-

ranted (LaGreca, 1990). Unfortunately, funding is limited.

Therefore, it is important to determine if currently avail-

able measures result in an accurate assessment of variables











that might increase the probability of social problems for

pediatric oncology patients (Kupst et al. 1995; LaGreca,

1990). Additionally, assessing whether the influence of

disease and individual characteristics varies depending upon

the stage of the illness would be extremely useful in the

development of social interventions. Thereafter, the social

programs could then be targeted at the children who have the

strongest need for such services.

One purpose of this study was to examine the relation-

ship between stage of illness and social adjustment in pedi-

atric oncology patients. A second purpose of this investi-

gation was to try to determine what combination of charac-

teristics are associated with social functioning in pediat-

ric oncology patients. This was accomplished by examining

the relationships between social adjustment and the various

participant, disease, and psychological variables included

in the study. Lastly, the concurrent validity of the Social

Adjustment Inventory for Children and Adolescents (SAICA)

was assessed by studying its relationship to the Social Com-

petence Scale of the CBCL. The information gathered from

this investigation can hopefully be used to direct resources









57

towards the pediatric oncology patients in greatest need of

social intervention.

It should be noted that in accordance with his Tri-

Component Theory of social competence, Cavell (1990) sug-

gested that the identification of children at risk for so-

cial functioning difficulties is most efficacious if the

clinician first assesses the child's social adjustment in a

broad range of social contexts. If social adjustment prob-

lems are detected, then the clinician would try to determine

the child's deficits in the social-information processing

steps mentioned in the various theories of social competence

(Cavell, 1990; Dodge & Crick, 1994; Yeates & Selman, 1989).

Congruent with the ideas of Cavell (1990), this study fo-

cused on the social adjustment of pediatric cancer patients

across various domains. However, in order to increase the

feasibility of the current study, the examination of social

information processing skills was not included in the cur-

rent investigation. This exclusion notwithstanding, the

present study has the potential to clarify variables that

should be incorporated into social interventions.









58

Several hypotheses in this study are based on the find-

ings of previous research concerning psychosocial adjustment

to cancer. The six hypotheses specifically related to can-

cer variables that were addressed are:

(1) As a group, children with cancer will not differ

significantly on social functioning measures as compared to

non-chronically ill controls.

(2) The social adjustment of children with cancer will

be related to the following illness variables: (a) stage of

illness, (b) disease type, (c) disease status, and (d) ill-

ness-related restrictions in social contact.

(2a) Stage of illness will be related to the so-

cial functioning of children with cancer, with those

who have finished their treatment protocol having

better social adjustment than the children still

completing treatment or the children with residual

effects from their disease.

(2b) Children with cancers that do not primarily

involve the CNS with have better social functioning

than children with brain tumors.








59

(2c) Children who are in their initial experience

with cancer will have better social functioning than

those who have had disease recurrence.

(2d) Children with cancer who have a relatively

low level of illness-related restrictions in social

contact will have better social functioning than those

with a relatively high level of illness-based restric-

tions in social contact.

(3) Children with cancer who do not have a psychiatric

diagnosis will have better social functioning than those

with a psychiatric diagnosis.

(4) Because cancer and its treatment can decrease a

child's opportunity for social contact with other children,

children with cancer are expected to report lower levels of

social support from peers as well as higher levels of social

anxiety when compared to healthy controls.

The remaining hypotheses in this study are primarily

based upon research concerning the relationships among demo-

graphic variables, social functioning, and psychosocial ad-

justment. Applicable to both the Cancer and Control Groups,

these hypotheses are:









60

(5) Older children will have better social functioning

than younger children.

(6) Children with higher levels of social support from

peers will have better social functioning than those with

lower levels of social support.

(7) Children who are female and/or younger will report

greater social anxiety than children who are male and/or

older.

(8) Children with less social anxiety will have better

social functioning than those with more social anxiety.















METHOD


Participants

Participants were children between 5 and 12 years of

age. Two groups of children were recruited for this inves-

tigation. Group 1 (Cancer) consisted of 80 children diag-

nosed with cancer. Children who were in palliative care or

could not be classified into one of the five stage of ill-

ness categories were excluded from the study. It should be

noted that data from one child with cancer could not be used

due to the recency of his diagnosis (i.e., the study data

were obtained less than two weeks after the child was diag-

nosed). In addition, the assessment batteries of three

children with cancer were incomplete because of missing par-

ent questionnaire data (two cases) and questionable child

report (one case). This resulted in the full assessment

battery being available for 77 of the children with cancer.

Only 10 of the 91 families of children with cancer who were

approached regarding the study declined to take part, re-

sulting in an 89% participation rate.











Group 2 (Control) consisted of 95 healthy school-aged

children recruited from the city where the Health Science

Center is located. All children in the Control Group had no

known severe chronic illnesses or psychological diagnoses.

Approximately 220 local families were approached regarding

the study, with half of them agreeing to participate. Un-

fortunately, data from 25 of the healthy children were not

useable due to questionable responding from parents and/or

children. A total of 95 children successfully completed the

child measures. However, two of the healthy-child assess-

ment batteries were incomplete due to missing parent data.

Therefore, the full assessment battery was obtained for 93

Control Group participants.

Measures

The main objective of the present investigation was to

examine the relationships among participant variables, dis-

ease variables, psychological variables, and the overall so-

cial adjustment of pediatric cancer patients. The variables

believed to be associated with social functioning included

several individual characteristics, disease characteristics,











social anxiety, and social support. Table 3 presents a

brief description of the measures that were used in this in-

vestigation and the age group to which they apply. All of

the measures were only used with children ages 5 to 12 even

if they were applicable to other ages as well.




Table 3
Measure Information

Measure Age Range Domain Assessed

Demographic Questionnaire 5 to 18 subject demographics

Cancer Questionnaire 5 to 18 cancer variables

SSS 8 to 14* social support

SASC-R 6 to 12 social anxiety

CBCL 4 to 18 social competence &
behavior problems

SAICA 6 to 18* social adjustment


Although developed for children over 5 years of age, these
measures were chosen because an examination of the items re-
vealed that these questionnaires adequately capture the so-
cial functioning of late preschool and kindergarten age
children. As described in the procedure section, the ques-
tionnaires were read aloud to the children and the examiner
was provided with a list of standard synonyms which could be
used to define words that were not understood by the child.











Predictive/Independent Variable Measures

Many participant characteristics served as predictive

variables in the present investigation. A Demographic Ques-

tionnaire to record these variables was developed for this

study (Appendix A). Demographic variables and other par-

ticipant characteristics, such as age, gender, ethnic back-

ground, socioeconomic status, family structure (i.e., the

number of adults in the home and their roles with respect to

the child), family duration (i.e., how long the current fam-

ily structure has been in existence), family size (i.e., the

number of children living at home), and preexisting psycho-

pathology in the child, were gathered from questions on the

demographic questionnaire. Socioeconomic status (SES) was

assessed by asking if families were receiving federal assis-

tance.

For the Cancer Group participants, disease variables,

including the child's specific diagnosis, age at diagnosis,

illness duration, treatment types, disease type, disease

status, stage of illness, and illness-related restrictions

in social contact were obtained from interview inquiries,











reviewing the participants' medical records, and questions

on both the demographic and cancer forms. Three categorical

disease variables of interest for the children with cancer,

namely stage of illness, disease status, and disease type,

served as predictive variables in this study. The stage of

illness variable consisted of the five groups of early, mid-

dle, late, stable, and post-treatment, respectively. The

data manager at the University of Florida Cancer Center pro-

vided the examiner with the typical protocol length and ill-

ness stages for the diseases; these data were used to help

classify the children into one of the five stage of illness

groups. The medical respondent was asked to take the above

illness characteristics into account when determining the

stage of illness for each child. Since illness duration and

stage of disease are not equivalent across cancers, illness

duration was also measured. The disease status variable in-

volved the two categories of initial diagnosis and recurrent

disease. Lastly, the disease type variable consisted of the

two categories of central nervous system disease (CNS)/brain

tumors versus cancers that do not primarily involve the CNS.








66

An illness-related restrictions in social contact score

was assigned to each child with cancer. This score was cal-

culated by asking the medical respondent to assess the ex-

tent to which both disease-related physical limitations and

decreased immunological functioning were influencing the

child's potential for social contact. The medical respon-

dent was asked to take the child's diagnosis and treatment

protocol into account when responding to the brief, 2-item

questionnaire regarding restrictions in social contact. The

measure was most often completed verbally, with the examiner

asking the questions and the respondent providing verbal in-

stead of written responses. Having a YES/NO format, the an-

swers to these four questions were combined into a summary

score that serves as the illness-related restrictions in so-

cial contact variable. This social restrictions score can

range from 4 to 8, with higher scores representing fewer

disease-related limitations in social contact. The top por-

tion of the Cancer Questionnaire included space for the ex-

aminer to record many of the disease-related variables de-

scribed previously (Appendix B).











Outcome variable Measures

Two measures were used to assess general social func-

tioning, the main outcome or dependent variable in this

study. The dependent measure of primary interest was the

Social Adjustment Inventory for Children and Adolescents

(SAICA). Developed by John, Gammon, Prusoff, and Warner

(1987), the SAICA is a measure designed to assess the social

adjustment in youngsters ages 6 to 18. However, with the

exception of some items on the school scale, this measure

would also seem to apply to slightly younger children as

well. The SAICA can be completed by a child as a self-

report measure or by a parent about his/her child. While

designed as a semi-structured interview, the SAICA can be

self-administered to children 10 years and older. Taking

approximately 30 minutes to com-plete, the test consists of

71 questions (41 problem items and 30 competence items),

which are each rated on a scale from 1 to 4. The items are

either read aloud by the examiner or read silently by the

subject, depending upon his/her reading ability. Each of

the questions is presented in the structured alternative











format developed by Harter (1982). Designed to counteract

the tendency to respond in a socially desirable manner, the

structured alternative format requires the respondent to

first decide whether the positive or negative phrasing of of

the same statement fits him/her best and then indicate if

his/her choice is sort of true or really true. On the

SAICA, the child or parent rates the child's functioning in

the four role areas of school, peer relationships, sparetime

activities, and home adjustment. The home adjustment area

is further subdivided into relations with parents and sib-

lings. A heterosexual subsection is included for children

13 years and older. Consequently, the six possible sub-

scales are School Functioning, Peer Interactions, Sparetime

Functioning, Heterosexual Interactions, Interactions with

Siblings, and Interactions with Parents. In addition, one

can also calculate a competence score, problem score, and

total score.

Both the summary scores (i.e., the competence, problem,

and total scores) and the subscale scores are determined by

calculating the mean for the appropriate items, with lower











scores equaling better functioning. Although there were

some differences in subscale-factor loadings depending on

whether the informant was the parent or the child, the three

nearly identical factors that emerged from the parent and

child data were labeled Task Performance, Sparetime Socia-

bility, and Family Relations. These factors explained 24%,

14.7%, and 16.7% of the variance in the parent report, re-

spectively. According to the child report data, each factor

accounted for 16.7% of the variance in the SAICA Total

Score. The above factor and variance results were deter-

mined by Gammon et al. (1987).

While denying the presence of gender effects, John, et

al. (1987), did acknowledge some age effects. Specifically,

they indicated that when compared to older children, chil-

dren 11 years old and younger watched less television, were

more involved with their fathers, and exhibited fewer prob-

lems with their parents. However, these younger children

were said to demonstrate more peer difficulties than the

adolescents. Although there was a relatively small norma-

tive sample and very few children in the 6 to 8 year old age











range, research suggests that the SAICA can successfully

distinguish between children with and without Axis I pathol-

ogy as well as between children with and without attention

deficit disorder (John et al., 1987; Biederman, Faraone, &

Chen, 1993). John et al. (1987) also reported high correla-

tions between SAICA and CBCL items and subscales that are

professed to assess similar content areas; these significant

correlations imply relatively good concurrent validity be-

tween the SAICA and CBCL. In the current study, the SAICA

Total Score will be used to indicate overall social adjust-

ment.

The second dependent measure was The Child Behavior

Checklist (CBCL). Developed by Achenbach (1991), the CBCL

is an empirically derived, multiaxial questionnaire designed

to screen for general psychopathology in children between 4

and 18 years of age. The measure consists of 20 social com-

petence questions, 118 problem items, and two open-ended

questions. The 20 social competence items cover the three

areas of school performance, activities, and social involve-

ment. The activities and social subscales assess both the











quality of contact as well as the level/amount of contact.

The 118 problem items are separated into the eight subscales

of withdrawn, anxious/depressed, social problems, somatic

complaints, thought problems, attention problems, aggressive

behavior, and delinquent behavior. These 8 subscales are

then combined to result in internalizing, externalizing, and

total problem scores (Drotar, et al. 1995). Frequently used

in research and clinical practice, the CBCL norms are based

on large samples (N=2368). In most circumstances, the CBCL

is considered to yield both reliable and valid assessments

of symptoms. However, Drotar et al. (1995) note that the

CBCL's assessment of social competence and physical symptoms

are potentially misleading (i.e., implying more difficulty

than is actually the case), which is particularly problem-

atic when used with ill children.

Because of the intention to use a combined SAICA/CBCL

score as the primary measure of social adjustment, a scoring

system was created for the CBCL to make it more analogous to

the SAICA. This scoring system also made it easier to as-

sess the concurrent validity of the SAICA to the CBCL. This











scoring method involved separating the Social Involvement

area on the CBCL into the three areas of Peer Relations,

Sibling Relations, and Relations with Parents. A CBCL So-

cial Competence Score, which was adjusted for the number of

items completed, was then developed to serve as a comparison

measure for the SAICA Competence Score. Similarly, the mean

for the CBCL problem items was calculated in order to serve

as a comparison score for the SAICA Problem Score. In this

study, the CBCL Social Competence Score can range from 0 to

1.9 while the CBCL Problem Score can range from 0 to 2; in

both cases, lower scores represent better functioning. It

should be noted that the above comparisons were the same as

many of those conducted by John et al. (1987) in their anal-

ysis of the content similarity between the SAICA and CBCL.

Since the SAICA does not have separate norms based on

age and gender, the modified CBCL scoring system did not in-

clude these variables. However, age and gender were in-

cluded as covariates in the analyses involving the combined/

joint SAICA/CBCL score. The SAICA and CBCL summary scores

were transformed into z-scores prior to forming the Joint








73

Score, thus allowing one to compare the two measures despite

differences in their original scales.

Social Anxiety Measure

The Social Anxiety Scale for Children-Revised (SASC-R)

was an independent variable in some analyses and a dependent

variable in other analyses. Developed by LaGreca and her

colleagues, the SASC-R is a self-report questionnaire de-

signed to assess social anxiety in children ages 6 to 12.

However, the questions also appear to be appropriate for

slightly younger children, assuming that they have contact

with others. According to LaGreca and Stone (1993), the

test is designed to measure the two components of social

anxiety that Watson and Friend (1969) identified in adults,

namely fear of negative evaluation from others (FNE) and de-

liberate avoidance of and distress in social situations

(SAD). Taking less than 10 minutes to complete, the test

was normed on children in the fourth through sixth grades.

The Flesch-Kincaid formula revealed that SASC-R's reading

ability has a grade equivalent of 2.5. Each of the test's

22-items (18 substantive and 4 filler) is scored on a Likert











scale ranging from 1 (hardly ever true) to 5 (true all the

time). Subscale (i.e. Factor) scores are determined by

finding the mean of the relevant items, with lower scores

equaling better functioning. LaGreca and Stone (1993) note

that the SASC-R is an improvement over its 10-item, 2-factor

predecessor, the SASC, in terms of psychometric properties

and in providing more extensive coverage of the SAD aspect

of social anxiety. The three factors on the SASC-R are FNE

(fear of negative evaluation from peers), SAD-New (social

avoidance and distress in new situations or with unfamiliar

peers), and SAD-General or SAD-G (generalized social avoid-

ance and distress). These factors accounted for 68.9%,

13.1%, and 7.8% of the variance in the total SASC-R, respec-

tively. The internal consistency for each subscale (i.e.,

Factor) as measured by Cronbach's coefficient alpha was .86

for FNE, .78 for SAD-New, and .69 for SAD-G.

LaGreca and Stone (1993) indicated the presence of gen-

der and age effects. Specifically, younger children and

girls obtained significantly higher SASC-R total scores and

subscale scores than older children and boys. Indicating











that the SASC-R is able to differentiate among peer status

groups, LaGreca and Stone (1993) suggest the use of the 3

factor scores rather than the total score. Sample size

limitations necessitated using the SASC-R total score rather

than the factor scores in analyses. However, all 3 factor

scores as well as the total score were calculated.

Social Support Measure

Similar to the SASC-R, The Social Support Scale for

Children (SSS) served as an independent variable in some

analyses and a dependent variable in other analyses. Devel-

oped by Harter and her colleagues, the SSS is a self-report

questionnaire designed to assess perceived social support

received from significant others. Although initially in-

tended for use with children 8 to 14, the measure also ap-

pears to be appropriate for younger school-aged children.

Harter (1985) indicated that the SSS defines social support

as the positive regard one gets from significant individuals

in his/her life. Taking 10 to 15 minutes to complete, the

questionnaire was normed on children in the third through

eighth grades. Harter (1985) stated that the SSS can be











administered in either an individual or group format, with

5th graders and older being capable of reading the items to

themselves. Scored from 1 to 4, each of the test's 24 items

is presented in the structured alternative format described

previously. The SSS consists of 4, 6-item subscales which

are said to look at the four sources of social support iden-

tified by Harter and her colleagues; these four sources of

social support are parents, teachers, classmates, and close

friends. Harter (1985) acknowledged that other sources of

support, such as siblings, may be important and should be

assessed in certain situations by developing relevant items.

For elementary students (grades 3-6), the internal con-

sistency coefficients for the subscales were .78 for the

parent subscale, .74 for the classmate subscale, .82 for the

teacher subscale, and .74 for the friend subscale, respec-

tively. Harter (1985) indicated that they rewrote and re-

worded 4 of the friend items and I classmate item to try to

improve the reliability of those subscales. She also stated

that only 3 factors emerged for the elementary school stu-

dents, with the friend and classmate subscales forming a











combined factor. Four factors, which generally correspond

to the four subscales, emerged for middle school youth. Be-

cause many of the Cancer Group participants were unable to

attend school, the Friend Scale score served as the measure

of peer social support in the present study.

Procedure

Participant Recruitment of the Cancer Group

Cancer Group participants included children with cancer

who were medically followed at Shands Hospital. Potential

participants were identified by reviewing the list of chil-

dren scheduled for outpatient clinic visits at the Cancer

Center or Brain Tumor Clinic. The remaining cancer partici-

pants were children admitted to the 9th floor at Shands Hos-

pital, which includes pediatric oncology patients. For all

children with cancer, nurses were first asked if the child

was feeling well enough to answer some questions. Thereaf-

ter, the purpose and nature of the study were explained to

the potential participant and his/her parent. Informed con-

sent from the parent and assent from the child were then ob-

tained (Appendices C and D).











Participant Recruitment of the Control Group

The majority of healthy control participants were re-

cruited in the summer of 1997 by contacting Summer Camps and

Daycare Centers in Alachua County, where the Health Science

Center is located, and providing them with a description of

the study. Specifically, they were told that the investiga-

tor was interested in studying the social relationships of

children 5 to 12 years of age. Directors of these programs

were asked to send home a cover letter describing the study.

Thereafter, parents were approached as they dropped off and

picked up their children. Parents who had healthy children

(in accordance with study criteria) and were willing to par-

ticipate were given a packet containing study-related mate-

rials. The investigator also wrote down the parent's name

and phone number to try to facilitate the return of parent

measures as well as to set up a convenient time to speak

with the child.

It should be noted that because of discrepancies in the

age/gender combinations among the cancer and control par-

ticipants, 20 additional control children were obtained in











late 1998 and early 1999 from medical establishments (i.e.,

a Pediatrician's office and Rehabilitation Hospital) located

near the Health Center. The parents of these control par-

ticipants were approached regarding the study while they

were waiting for medical appointments or not occupied with

job tasks. As with the previously collected controls, those

parents who were willing to participate were given a packet

containing study-related materials. Similarly, the investi-

gator wrote down the parent's name and phone number to try

to promote the return of parent measures as well as to set

up a mutually agreeable time to speak with his/her child.

For all control participants, parents provided verbal con-

sent when the parent packets were handed out. See Appendix

E for the Informed Consent form used for the Control Group.

Testing Procedures for the Cancer Group

The principal investigator or her research assistant

requested that the parent fill out the Demographic Question-

naire, CBCL, and SAICA. Concurrently, the SASC-R and SSS

were administered to the child. To avoid potential compli-

cations associated with poor reading skills, the measures











were read aloud to all children. The children were told

that the examiner was interested in how children get along

with other people, so she was asking children questions.

They were informed that there were no right or wrong answers

to the questions and that no one would know how he/she re-

sponded. Children were told they should ask questions about

anything that was unclear. The research assistants were in-

structed to ask children if they knew the meaning of certain

words, e.g., nervous and shy. If the child said no, then

the examiner selected a synonym from a provided list to as-

sist the child in answering the items. Children's questions

took 10 to 15 minutes to complete.

Most parents finished their questions in less than 30

minutes. The majority of outpatient participants filled out

the measures while they were at Shands Hospital for a clinic

appointment. Due to time constraints, a few parents com-

pleted their forms at home and then mailed them to the in-

vestigator in a pre-stamped, addressed envelope. Inpatient

participants completed the measures in either their room or

in the common area on their floor at Shands Hospital.











Testing Procedures for the Control Group

A packet containing a cover letter, measure instruc-

tions/directions, written consent form, and three parent

questionnaires was given to a parent of each control child.

One parent was asked to fill out both the CBCL and SAICA to

avoid interrater reliability issues. Either parent could

complete the demographic questionnaire. In the cover let-

ter, the examiner requested that the parent put the measures

into the provided envelope and return them to the data col-

lection site or directly to examiner through the University

of Florida mail system. Parents were informed that a la-

beled box was located at the office of their recruitment

site if the investigator was not present when they returned

their questionnaires.

The child completed his/her two questionnaires during a

time block that was convenient to the establishment where

data was being collected (i.e., camps, daycare centers, and

medical offices). Each child was seen individually for ap-

proximately 15 minutes. The measures were read aloud to all

control subjects due to variability in reading skills. As









82

with the cancer participants, the control children were told

that the examiner was interested in how children get along

with other people, so she was asking children questions.

They were informed that there were no right or wrong answers

to the items and that no one would know his/her responses.

Children were told they should ask questions about anything

that was unclear. Likewise, the research assistants were

told to use the synonym list if a child did not understand

certain words.

Incentives and Confidentiality

All parents and children were told that none of the

questionnaires had correct or incorrect responses. As an

incentive to participate in the study, a $2 gift certificate

to a local movie theater or a coupon good for a free Happy

Meal at McDonalds was made available to all child partici-

pants. Additional incentives for the Control Group were a

chance to win a $25 gift certificate to a restaurant or a

$10 movie pack. The winners of these rewards were randomly

selected from those control participants whose parent and

child data was complete. The restaurant certificate and one











movie pack were awarded to two families from the 1997 data

collection group. Another movie pack was given to one fam-

ily from the 1998-1999 study participants.

All of the participants were assigned a number in order

to maintain their anonymity. Confidentiality was further

insured by keeping the test materials in a locked office in

the Health Science Center. Individuals taking part in the

study were told that the principal investigator could be

contacted if there were any questions.















RESULTS


Information acquired from the interviews, medical rec-

ord reviews, demographic questionnaires, medical question-

naires, and the administration of the remaining predictive

and outcome measures was coded and entered into a database.

Subsequently, SPSS for Windows was utilized to conduct the

analyses in this study, which are described below.

Demographic and Cancer Information

Demographic Information

The majority of demographic information was available

for 175 participants and is presented in Table 4. The mean

age for the entire sample was 8-years, 5-months. There were

no significant differences between the Cancer and Control

Groups (t(173)=-.76, p=.446) with respect to age at the time

of assessment. In the Cancer Group, the average age of par-

ticipants was 8-years, 4-months, with a range of 5-years,

0-months to 12-years, 9-months. In the Control Group, the

average age of participants was 8-years, 7-months, with a











range of 5-years, 0-months to 12-years, 11-months. There

were no significant differences between the two participant

groups with respect to the distribution of males and females

(1()=.01, p=.917). Boys comprised 55% of the Cancer Group

and 55.8% of the Control Group.

Chi-square analyses revealed no significant differences

between the Cancer and Control Groups in the distribution of

all ethnicities (x(6)=7.525, p=.275), minorities and Cauca-

sians (X_(I)=.962, p=.326), or African-Americans and Cauca-

sians (_(1) =4.627, p=.099). However, a review of the data

does suggest that this trend towards different proportions

of African-American and Caucasian children in the two par-

ticipant groups primarily arises from the larger percentage

of female African-American children in the Cancer Group

(36.1%) relative to the Control Group (7.1%).

Various chi-square analyses indicated no significant

differences between the Cancer and Control Groups with re-

spect to family structure (_x(4)=3.686, p=.450), family du-

ration (x(3)=2.569, p=.463), or family size (x2 (4)=7.322,

p=.112). In the majority of families, both the mother and








86

father were living in the home (Cancer Group=63.8%, Control

Group=65.3%). The second most common family structure was

households headed by single mothers (Cancer Group=22.5%,

Control Group=23.2%). Most families had maintained their

current parental composition for 5 or more years (Cancer

Group=77.2%, Control Group=84.2%). Lastly, the majority of

families had two or fewer children currently living at home

(Cancer Group=58.75%, Control Group=76.85%).

Most children in both the Cancer (81.3%) and Control

(96.8%) Groups were not receiving family-based federal as-

sistance. However, chi-square analyses did reveal that sig-

nificantly more Cancer Group families were receiving federal

aid in comparison to Control Group families (X_(l)=11.442,

p=.001). These data suggest that the Cancer Group had more

lower income families than the Control Group.

Mothers were the most common respondent to the ques-

tionnaires for both the Cancer Group (81%) and Control Group

(80%). There were no significant differences in the adult

informant between the groups (_(3)=1.354, p=.716). How-

ever, there were significant differences between the Cancer











and Control Groups with respect to the number of school or

camp days missed in the month preceding data collection

(t(170)=9.53, p=.000). This was expected given that 57.5%

of the cancer participants were in the treatment phase of

their diseases and treatment often necessitates frequent

school absences due to medical appointments.

T-tests indicated that the parents of children in the

Control Group had attained a significantly higher level of

education than the parents of children in the Cancer Group

(maternal education, t(169)=-3.78, p=.OOO, paternal educa-

tion, t(151)=-2.67, p=.009). However, it is noteworthy that

at least a 12th grade education was typical for both mothers

and fathers within both groups. Specifically, average ma-

ternal and paternal education were 13.39 and 13.91 years for

the Cancer Group and 14.78 and 15.18 years for the Control

Group, respectively.

Cancer Information

Three tables contain the cancer participants disease-

related variables and child psychopathology data. Because

research has occasionally revealed gender differences with












Table 4
Demographic Information


Cancer Control
Entire (n=80) Entire (n=95)
Variable Sample Boys Girls Sample Boys Girls

Age(vears-months) M and 8-4 8-1 8-7 8-7 8-4 8-10
(SD) (2-4) (2-4) (2-3) (2-3) (2-3) (2-3)

Gender n 80 44 36 95 53 42

S 100 55 45 100 55.8 44.2

Ethnicity
Caucasian n 59 39 20 76 43 33

%; 73.8 88.6 55.6 80 81.1 78.6

African-American n 17 4 13 10 7 3

9 21.2 9.1 36.1 10.5 13.2 7.1

Other n 4 1 3 9 3 6

S 5 2.3 8.3 9.5 5.7 14.3

Family Structure
Mom & Dad n 51 28 23 62 36 26

W 63.8 63.6 63.9 65.3 67.9 61.9

Mom only n 18 11 7 22 14 8

W 22.5 25 19.5 23.2 26.4 19.05

Mom & Stepdad n 8 5 3 11 3 8

S10 11.4 8.3 11.5 5.7 19.05











Table 4--continued


Cancer Control
Entire (n=80) Entire (n=95)
variable Sample Boys Girls Sample Boys Girls

Family Duration
Always n 48 27 21 67 41 26

% 60 61.4 58.3 70.5 77.4 61.9

Over 5 years n 16 7 9 13 5 8

% 20 15.8 25 13.7 9.4 19

1 to 4 years n 9 5 4 10 6 4

% 11.3 11.4 11.1 10.5 11.3 9.5

less than l year n 7 5 2 5 1 4

% 8.7 11.4 5.6 5.3 1.9 9.5

Family Size
1 or 2 Children n 47 24 23 73 42 31

% 58.75 42.5 63.9 76.85 79.25 73.8

3 or more Children n 33 20 13 22 11 11

% 41.25 45.5 36.1 23.15 20.75 26.2

Federal Aid Yes n 15 7 8 3 1 3

S 18.7 15.9 22.2 3.2 1.9 4.8

No_ n 65 37 28 92 52 40

S 81.3 84.1 77.8 96.8 98.1 95.2











respect to disease and treatment characteristics, gender

comparisons were computed for these variables. Table 5 has

the categorical disease variables. There were no signifi-

cant gender differences between male and female cancer par-

ticipants with respect to disease type (x2(l)=.914, p=.339),

surgery (x(l)=.025, p=.875), bone marrow transplantation

(BMT) (_()=.558, p=.455), disease-based physical/sensory

changes (&(1)=.665, p=.415), school status (K(l)=.894,

P=.344), or type of classroom ((l) =1.27, p=.26). Specifi-

cally, the majority of children with cancer had non-CNS dis-

eases (72.5%), had needed surgery (53.8%), had not undergone

BMT (88.7%), and did not have permanent physical/sensory

changes as a result of their illnesses (67.5%). Most chil-

dren with cancer were attending school on a regular basis

(61.3%) and were not receiving special education services

(83.7%).

In contrast, there were some gender differences with

respect to stage of illness (xA(4)=7.028, p=.134), treatment

status (_(1)=4.257, p=.039), disease status (X(l)=2.886,

p=.089), chemotherapy (x_(1)=5.657, p=.017), and radiation









91

(&(1)=1.835, p=.176). Review of the stage of illness data

revealed that a larger percentage of females than males had

completed treatment (44.4% and 22.7%, respectively). In ad-

dition, more boys than girls were in the late (18.2% versus

11.1%) or stable (15.9% versus 2.8%) stages of their dis-

eases. These gender-related stage of illness differences

are further supported by the larger percentage of males than

females who were currently receiving treatment or had resid-

ual treatment/disease effects at the time of data collection

(77.3% and 55.6%, respectively). Although the majority of

children had not relapsed (87.5%), recurrent disease was

more common for males (18.2%) than females (5.6%). While

most children had received chemotherapy (87.5%), chemother-

apy was more frequently used with females (97.2%) than males

(79.5%). Similarly, while radiation treatment was used with

only 33.7% of the children with cancer, it was a more common

treatment for females (41.7%) than males (13.6%). Lastly,

formal psychological diagnoses were rare in the cancer sam-

ple (5%), with boys being the only gender with documented

psychological disturbance (9.1% of males and 0% of females).












Table 5
Categorical Disease Variables


Entire Sample Boys Girls
(n=80) (n=80) (n=80)
Variable n _n n 9

Stagce of Illness

Early 19 23.8 11 25 8 22.2

Middle 15 18.8 8 18.2 7 19.5

Late 12 15 8 18.2 4 11.1

Post 26 32.4 10 22.7 16 44.4

Stable 8 10 7 15.9 1 2.8

Disease Status

Initial 70 87.5 36 81.8 34 94.4

Recurrent 10 12.5 8 18.2 2 5.6

Disease Type

Non-CNS Cancer 58 72.5 30 68.2 28 77.8

Brain Tumors 22 27.5 14 31.8 8 22.2

Disease-Related
Physical Changes

YES 26 32.5 16 36.4 10 27.8

N 54 67.5 28 63.6 26 72.2











Table 5--continued


Entire Sample Boys Girls
(n=80) (n=80) (n=80)
Variable n n % n

Treatment Types

Chemotherapy 70 87.5 35 79.5 35 97.2

Surgery 43 53.8 24 54.5 19 52.8

Radiation 27 33.7 12 27.3 15 41.7

BMT 9 11.3 6 13.6 3 8.3

Psychological
Diagnosis

YES 4 5 4 9.1 0 0

NO 76 95 40 90.9 36 100

School Status

Regular 49 61.3 29 65.9 20 55.6

Homeschooling 31 38.7 15 34.1 16 44.4

Type of Classroom

Regular 67 83.7 35 79.5 32 88.9

Special Ed. 13 16.3 9 20.5 4 11.1