Effects of Social Competence Factors

on Self-esteem and Behavior

in Adolescents with Cerebral Palsy

by

Leigh Ann Kramer, B.S., M.S.E .

A Dissertation submitted to the Faculty of the Graduate School, Marquette University, in Partial Fulfillment of the Requirements for the Degree of

Doctor of philosophy

Milwaukee Wisconsin ,

May, 1998

Table of Contents

Page

Abstract ..... .. .... ........... .... ....... ....... .. ... ..... .... ....... ... ......... ..... ... ..... . Acknowledgments.. . ...... .... . . ........ . . . . . . .. .... . ... ... . .. . ...... . ... .. . . .. . .... .. ... III

Chapter

1 Introduction to the Study...... ...... ..... ... ... ........ ................. ......... ..... 1 Cerebral Palsy. .... ... ...... ........ ... ......... ......... .. ........ ..... ....... ... ... ... .. .. 2 Statement of the Problem......... .. .... ...... ........................... .. ... ...... .. 4 Purpose of the Study............... .. ....... .... .. ... ... .. ... ... .... .. ... .... ... ... .... . 5 Research Questions.......... ....... ...... ... ......... ....... ........ ...... ............ .. 7 Need for the Study......... ............................ ... ...... .. ... ... ..... .. ... ....... 7 Significance of the Study..... .... .... .. ............ .............. .... .. .... ..... .. .... 8 Definition of Terms..... .... .......... .... ... .. ... ............. ... . ...... ....... .... ..... 8 Assumptions of the Study......... ............... .... ....... .......... ..... .. .. ... .... 10 Limitations of the Study. ......... .... ..... .......... .. ....... .... .. ........ ... ........ 10 Conclusion. . .. . ... ... ....... .. ... ...... .. .. ... ... .... . ........ .... .. . .... .... . .. . ..... . ... . .. 11

2 Literature Review........ ............... ............... ............... ..... ........ ... .... 13 Role of Family Attitude. ... ....... .... ... ...... .. .. .. ..... ........ .... .......... .... ... 14 Societal Shift...... ..... ..... ...... .. ... ..... .... ............ .. .. ....... ........ .... ...... ... 15 Table of Earlier Studies... .... ..... ......... .... ... .... .... .. ... .. .... .... ... ......... . 20 Review of Assessment Tools... ..... ... .......................... .. ... ..... ........ . 23 Path Analysis Mediation ModeL ....... .... ..... .... .. .............. .. ..... .... ... . 27 Formal Hypotheses........ ....... .......... ....... .... ... .... ........ ..... .. .. ...... .. .. 29 Summary .... ..... ... ... ... ... .. .. ........ ... .. ... ....... .............. ......... .... .... ....... 31

3 Methods. .... .. ... ...... ...... .. ....... .. ... .. ..... ... ..... .... ..... .. ... .. ... ... .. . ... .... .... 32 Participants... ...... .. ......... ..................... .... ... ..... .......... ..... .. ... ..... ..... 33 Materials Used in the Study.... .... ... .. ............. .. ..... ... ... .. ... ....... ........ 33

Demographic and Child Health Information Survey ... ..... .... 33 Achenbach CBCLIYSR. ...... ... ... .. .... .... ..... .. .... ...... .. .... .... ... . 34 Rosenberg Self-Esteem Scale ........ ... ............. .............. .. ..... 35 Youth Questionnaire... ....... ... ....... ... ........... ........... ..... .. ... ... 35

Procedure .... ...... .. ... ....... ... ..... .... .. ...... ......... ........ .......... ........ ......... 36 Scoring .. ... .. .. ..... .. ........ ......... ... .... .... ....... ........ .... ..... .. .... .. ... ....... .. .. 37 Research Design. .. ........ ... .. . . ... .. . .......... ... .. ...... .. ... .. ... . .. ..... . . . ... . .... . . 38

4 Results ..... ... ............. .... ......... ... ........ ... .'. ... . ... . .. ....... . . . ... .. . . .. . . .. . . .. . . .. 40 Initial Analyses ...... ... .... .. ...... .... .... ..... ... ....... ... ....... : ........................ 40 Study Variables.. ......... ... ............ .... ...... ... .... .... ... ..... ........ ............. .. 41 Test for Mediation.. .... ........ ...... .......... ........ ... .... ... ..... ..... ............ ... 43 Primary Analysis .... .... ..... ........ ...... .. ................... ....... .. .. ...... ...... ..... 43 Secondary Analysis........................................ ........... .. ...... ........... .. 48

5 Discussion...................... .. ................ ............ .. ..... .. ... ..... .... .. ....... 49 Summary and Integration of Findings............................... ...... .. ... 49 Study Limitations...... ..................... ..... ..... .... .. ..... .................. ... ... 53 Intervention Implications.. ....... .. ... .. .. ... ... ... .......... ... ......... ..... .. .. ... 54 Future Directions.. ...... ... ...... ..... .......... ...... ...... ... ... .... ................... 55

References ...... .. ...... .......... ..... ... .. ... ........ ... .... .. ................... ..... ...................... .. ....... 58

Appendices A B C D E F G H I J K L M N o

Achenbach Child Behavior Checklist..... ........ ...... .. ...... ............. ...... 65 Achenbach Youth Self Report ....... .. .. .. ...................... ....... .. ..... ...... . 69 Rosenberg Self-Esteem Scale.. ... ......... ........... .......... .... .. ... ........ ..... 73 Stipend Receipt Form .............. ............................. ............. ............. 74 Subject Recruitment Letter to Professionals ... .... ... .. ... ..... .... ...... .... . 75 Subject Recruitment Letter to Families ....... .... ... .............. ..... ......... . 76 Demographic and Child Health Information Survey... ..................... 77 Youth Questionnaire. .... .. ... .... ........ .......... .... ....... ....... ...... .............. 82 Informed Consent Form ..... ... ...... ...... .............................................. 83 Range of Family Income ... ...... ... ........ .. ................. ........... .. ........ ..... 84 Geographic Location of Families Throughout Wisconsin ........ ... .. ... 85 Disability Rating Results. ........ .......... ..... ........ ... ... ................. ...... ... 87 Ancillary Findings .. ................... .. ........ ... .. ...................................... 89 Disability Severity Results.. .. ..... ... .. . . . . . . . . . . ... . ......... . . .. ...... . ... ......... .. 94 Follow-up Contact Form ....... ....... ....... ...... ... .............. ............ .... .... 95

LIST OF TABLES

Table Page

1 Review of the Literature..... ... .. ... ... .. .... ......... ... .. ...... .............. .. ... .. ........... 20 2 Descriptive Statistics of the Main Study Variables........................ .. ........ . 42

M-l Descriptive Statistics of the Main Study Variables.... ............ .. .......... .. ..... 89 M-2 Self-esteem Scores by Birth Order.................. ........ .. ........... .. ..... ..... .. ..... . 90 M-3 Birth/Adoptive Parents Marital Status by Problem & Competence Scores .. 91 M-4 Learning and Other Disabilities by Problem & Competence Scores..... ..... . 93 N-l Disability Severity Ratings....... ... ...... .......... ......... ....... ........... .... ............. .. 94 N-2 Total Disability Severity Score.................. .... ... ... ... .. .............. .......... .. .. ... . 94

LIST OF FIGURES

Figure Page

1 Path Analysis Model. .. . ..... .. .. . ... ... ... . ......... ........ ........... .. .. ..... . ....... ... .. .. ... .. 28 2 Meeting the Conditions for Mediation...... .... .... .. .. .... ...... .. .. ...... .. .. .. .. .... .. .. 43 3 Path Analysis with CBCL Activities Competence Score as Mediator.. .. .. .. 45 4 Path Analysis with CBCL Social Competence Score as Mediator... . ..... .. .. 46 5 Path Analysis with CBCL School Competence Score as Mediator. .......... . 46 6 Path Analysis with YSR Activities Competence Score as Mediator. . .. ..... .. 47 7 Path Analysis with YSR Social Competence Score as Mediator.... ............ 47

J-l Range of Family Income....... ..... ... .. .. .................... ......... ....... ..... .. ....... ..... . 84 K -1 Geographic Distribution of Study Participants. ..... ............ .. ..... ......... .. .. .. ... 85 L-l Youth Disability Rating by Care Giver Disability Rating.. .. ........ ..... ....... ... .. 88 L-2 Youth Disability Rating by Interviewer Rating........... ..... ...... .... .... .. .. ... ..... 88

ABSTRACT

Leigh Ann Kramer, M.S.E. Mary P. Hoy, Ph.D.

Effects of Social Competence Factors

on Self-esteem and Behavior

in Adolescents with Cerebral Palsy

Thirty-one male and twenty-nine female adolescents (age 12-18) with cerebral

palsy and their primary care givers were recruited to investigate what role social

competence factors have on self-esteem and behavior. The youth completed three

assessment tools: the Rosenberg Self-esteem Scale, the Achenbach Youth Self-Report,

and a Youth Questionnaire. The care giver completed two assessment tools: the

Achenbach Child Behavior Checklist and a Demographic and Child Health Information

Survey.

T -tests indicated no difference in Self-esteem scores between genders. A multiple

regression path analysis utilizing Baron and Kenny's (1986) test for mediation investigated

relationships between disability severity, self-esteem, problem scores, and three

Competence Factors (Activities, Social and School). Results indicated a significant

negative relationship between disability severity and Activities (as severity increased,

activities decreased) but no relationship between severity and Social or School scores.

There was, however, a significant negative relationship between both Social and School

scores with Problem scores (as social and school competence decreased, Problem scores

increased). Disability severity did not significantly relate to either self-esteem or

11

Problem scores. Without significance, the criteria could not be met for direct mediation.

However, in four models, the size of the relationship between these independent and

dependent variables was reduced, indicating a trend toward a mediation effect when

competence areas were controlled.

These findings have implications for future research as well as intervention.

Limitations, research and intervention implications, along with directions for the future,

are discussed.

III

ACKNOWLEDGMENTS

It is difficult to know where to begin extending my appreciation to the many

people and organizations who have helped me pursue this goal. I must first give my

deepest thanks to the many families who participated in this study, welcoming me into

their homes and sharing their stories. Their hospitality and insights were most impressive

and appreciated.

The Wisconsin Council on Developmental Disabilities (WCDD) played an

important role by providing a grant to support this project. Their funding assured that the

families involved would be reimbursed for their time and input, rather than giving away

their expertise for free, as they too often must do. I thank WCDD for their recognition of

this valuable contribution.

I especially thank United Cerebral Palsy of Southeastern Wisconsin, Inc., my

employer for six years. In particular, Nan Upright-Sexton, John Cram and Cheryl

Boehmke were flexible, tolerant and supportive beyond my greatest expectations. I thank

them for their friendship and look forward to incorporating this research as we continue to

work on our mutual goals.

There are many other friends, fellow professionals, and family members who have

inspired and supported me over the course of many years. I sincerely hope that I can give

back to them as much as they have given to me.

I would like to acknowledge Dr. John Ivanoffwho served as my Academic

Advisor until his retirement. (Neither of us thought it would take me that long!) Special

thanks to Dr. Mary Hoy, Dean of Education, who stepped into his place and chaired my

Dissertation Committee. Her feedback and interest in my work was most encouraging.

Drs. Rebecca Bardwell, Mark Kipfinueller and Timothy Laughlin also provided much

needed guidance and support. And to the fifth Committee member, Dr. Jack Iverson, I

give my most heartfelt thanks. He has been a great friend for over a decade, challenging,

mentoring and, of course, reinforcing me as I pursued this lifelong goal.

IV

Most importantly, thank you to my family. My parents, Ronald and Barbara

Zimmerman, and my sister, Katie Zimmerman, patiently encouraged me and provided

countless hours of free babysitting services. They've done everything possible to help me

and never doubted that I'd accomplish my pursuit. The love they give to my children and

me gives us more strength than they will ever know. My daughters, Jessica and Michelle

Kramer, were (and continue to be) exceptional. I am so proud of how well they get along,

how they assumed responsibility for the details I couldn't keep up with, and how hard they

work toward their own goals and interests. It has been a pleasure being a student along

with them and is truly a joy to be their mom. And finally, to Bruce Kaiser, thank you

infinity times infinity for living with the mounds of paperwork, playing a first-rate Mr.

Mom at basketball games and ice skating lessons, debating professional issues with me,

traveling around the country and to exotic places with me, providing a wonderful home

for . our family, and supporting, encouraging, and loving me. I never knew such a

wonderful relationship could exist and I know how very fortunate I am to be part of it.

Thank you to all my family. I love you all very much.

Chapter 1

Introduction to the Study

1

According to the 1990 U.S. Census Bureau, approximately 48.9 million Americans

have some disability. This represents 19.4% of the total U.S. population (McNeil, 1993).

Approximately 4.0 million children and adolescents, or 6.1 % of the U.S. population under

age 18, have disabilities (LaPlante & Carlson, 1992). Traditionally, people with

disabilities have been separated from society and provided medically based services (if

any) in segregated settings. Studies of non-disabled persons' attitudes toward persons

with disabilities have shown that cerebral palsy is one of the least favorably viewed

physical disabilities (Tringo, 1970; Strohmer, Grans & Purcell, 1984). Separation of the

disabled population leads to 1) people with disabilities being treated as inferior when

compared to the general population and 2) the general population having limited

understanding of the similarities and capacities people with disabilities offer when included

in all aspects of community life. Wolfensberger's (1972) philosophy of "normalization" is

defined as "utilization of means which are as culturally normative as possible in order to

establish or maintain personal behavior and characteristics which are as culturally

normative as possible."(page 28). The concept of normalization was the first formal

proposal to include all people who had disabilities fully in society to the benefit of all

society. Specifically, he proposed the "enhancement of their personal competencies" via

changes in physical settings and promotion of relationships and activities, thereby

enhancing their social image. Wolfensberger (1983) stated the following:

... a person who is competency-impaired is highly at risk of becoming seen and

2

interpreted as oflow value, thus suffering image-impairment.. .[and] is apt to be

responded to by others in ways that reduce his/her competency. Both processes

work equally in the reverse direction; that is, a person whose social image is

positively valued is apt to be provided with experiences, expectancies and other life

conditions which generally will also increase his/her competencies ... (page 236).

Until the passage of Public Law 94-142 in 1975, there was no comprehensive law

securing an appropriate public education for children who had disabilities amid their peers

who did not have special educational needs. Until the passage of the Americans with

Disabilities Act in 1990, public services and community businesses were not compelled to

make their facilities accessible or accommodating to citizens with varying degrees of

physical, cognitive or emotional abilities. The past 25 years have brought the expansion of

long-term care services in school and Human Service Department run programs, early

intervention services, funding initiatives, and community integration opportunities. A

review of the literature suggests improvement, perhaps related to societal changes, in the

social-emotional adjustment and self-esteem of people affected by disabilities such as

cerebral palsy. There is, however, much discrepancy between studies and very little

research available specific to people with the condition of cerebral palsy.

Cerebral Palsy

The United Cerebral Palsy Research and Education Foundation (1997) estimates

that 500,000 - 700,000 children and adults in the U.S . manifest one or more of the

symptoms of cerebral palsy (CP). They report that about 5,000 infants are diagnosed with

3

the condition each year and, in addition, between 1,200 and 1,500 preschool aged children

acquire CP annually due to accidents or illnesses. They also report that, while strides

have been made in reducing some of the causes of cerebral palsy, the incidence of cerebral

palsy is on the rise at almost double earlier rates. One reason for this is the tremendous

ability now possible in preserving the life of premature and very low birth weight babies, a

predisposition for cerebral palsy. A second reason is the increasing number of multiple

births - twins, triplets, and quadruplets - due to fertility drugs and artificial insemination.

As the number of fetuses being carried by a pregnant woman increases, the probability of

developing complications with at least one of the fetuses also increases. Medical

technology has also contributed to a longer life expectancy. People with CP can be

expected to live as long as the non-disabled population when factors such as severe mental

retardation, severe mobility reduction and epilepsy are not present (Crichton, Mackinnon

& White, 1995).

The following description of cerebral palsy is the accepted definition of the United

Cerebral Palsy Research and Educational Foundation:

Cerebral palsy is a term used to describe a group of chronic conditions affecting

body movement and muscle coordination. It is caused by damage to one or more

specific areas of the brain, usually occurring during fetal development, before,

during or shortly after birth or during infancy. Most people with CP have average

or above average intelligence. Cerebral palsy itself is not progressive or

communicable. It is not a disease. It is not "curable" in the accepted sense,

however, training and therapy can help improve function and management of the

4

disability. (Research Fact Sheets, 1996)

According to Molnar (1992), 50% of children with cerebral palsy also have a ,

seizure disorder and 50% have vision deficits requiring correction. Their chances of

having developmental language or communicative disorders, not related to mental

retardation but possibly related to hearing impairments, are much higher than non-disabled

children. They may also have perceptual dysfunction (visual, auditory and other sensory

integration problems), feeding difficulties, drooling, and organic behavior syndrome which

may include symptoms of attention deficit, distractibility, or poor impulse control.

Molnar's work recommends the earliest possible intervention with close collaboration

between families and physicians to provide life experiences that will prepare the child for

his or her role in adulthood - including education, vocation and recreation as equally

important aspects of a person's well-being.

Statement of the Problem

While some research exists that is concerned with social adjustment issues of youth

who have disabilities, only nine studies over the past twenty years were found to have

focused on cerebral palsy as a distinctive condition (Minde, 1977; Teplin, Howard, &

O'Connor, 1981; Karton-Kant, 1984; Magill & Hurlbut, 1986; Magill-Evans & Restall;

1991; Resnick & Hutton, 1987; Kibele, 1989; Wadsworth & Harper, 1993; Becker &

Schaller, 1995). Even fewer studies have been devoted to identifying the supports,

interventions and circumstances in which a person with CP might achieve the most

positive outcomes. Resnick & Hutton (1987) and Blum, Resnick, Nelson, & St. Germaine

5

(1991) laid a foundation from their studies of60 individuals, ages 12-22, who had physical

disabilities and were found to have a more positive self-image and sociability if they had

friends, participated regularly in normal daily activities, had chores comparable to their

siblings, and, most importantly, had parents who were not overprotective. Stacey, Doleys,

& Malcolm (1979) note that vocational failure for adults with physical and cognitive

disabilities has more frequently resulted from lack of appropriate social interaction than

from an inability to complete the tasks ofa particular job. Wadsworth & Harper (1993)

emphasize the need for adolescents to practice social skill development, as teens with

disabilities "often mature in a world that confirms and maintains their differences, thus

setting up a cycle of social failure" (page 1021). Karton-Kant (1983) found that the

attributions of ability and effort within the population of adults who had CP were affected

more by success and failure experiences than by self-esteem. Learning how to support the

younger generation of people with cerebral palsy in successful environments should

promote healthier and more productive family, educational, employment and community

involvements.

Purpose of the Study

The purpose of this study was twofold. First, the study investigated the

relationship between disability severity and variables associated with social competence,

self-esteem and behavior problems among adolescents who have cerebral palsy. Second,

it identified relationships between key demographic variables and specific competence,

self-esteem and problem scores to determine if there was indeed an existence of problems

within this population. The current study proposed to enhance previous findings by

6

looking more closely at possible mediation effects of activity, social or school competence

factors and their relationship to self-esteem and behavior problems.

Many studies focus on problematic conditions of youth. For this study, a tool was

selected which not only measured problem areas but also youth strengths and

competencies. In determining the need for the inclusion of competency scores in a

behavior checklist, Achenbach ( 1991 a) states

The presence of particular competencies may be as important as behavioraV

emotional problems in determining what is needed to help a particular child. For

example, two children may have similar patterns of problems, but one child may be

found to have fewer competencies than the other. Efforts to strengthen

competencies may therefore be more essential in helping the first child than the

second .. . Among children who obtain similar test scores, for example, there are

great variations in school performance and other everyday indices of competence .

.. . Furthermore, involvement and skills in nonacademic activities, effectiveness in

social relations, and diligence in completing tasks are important factors of adaptive

development not tapped by tests. (page 15).

The intent was to assess which factors appeared to best predict self-esteem and

behavior problems so that family members and professionals might intervene and consider

modifications within the environment that encourage desirable outcomes and possibly

prevent negative consequences.

7

Research Questions

Four main relationships were addressed in this study. To test those relationships,

the study asked the following questions: First, is there a relationship between the severity

of a youth's disability and his or her participation or perceived competence in activities,

social or school endeavors? Second, is there a relationship between the severity of a

youth's disability and his or her behavior problems or self-esteem? Third, is there a

relationship between activity, social or school competence and a youth's behavior or self­

esteem? Finally, does increased participation or competency in activities, social or school

endeavors influence the relationship between disability severity and behavior problems or

self-esteem?

The study also attempted to address the discrepancy found in earlier studies related

to differences in scores, particularly self-esteem, based on gender and severity of disability.

Need for the Study

A 1986 Ontario Child Health Study conducted on 3,294 children ages 4-16

comparing healthy children to children with chronic illness, medical conditions and long­

term disabilities found strong evidence to demonstrate an association between chronic

health problems and mental health or adjustment problems (Cadman, Boyle, Szatmuri &

Offord, 1986). This research also suggested that parents of children with disabilities did

not place as much value on good mental health which accounted for an underuse of

specialized mental health services.

Results of the present study may have a bearing on potential interventions, both for

parents and within community support systems. Information obtained may be helpful to

the medical profession and the general public to dispel attributions of elevated problems

associated with a disability group by virtue of their differences and the general lack of

awareness. Where an elevated level of problems does exist, further education may be

justified in assisting individuals who have disabilities to access opportunities that will help

them achieve positive outcomes in personal and social endeavors.

Significance of the Study

Epidemiological research concerns itself with the study of the distribution of

disorders and factors influencing those disorders in human populations (Rogers, 1965;

Barker, 1976). With the purpose of this type of research, one would expect to clarify the

etiology of a problem, demonstrate human need, suggest future resource allocation and

service planning, and evaluate trends in societal change and service provision (Fryers,

1984). It has also been suggested that an inquiry of this type can be used in the initial

identification of a problem and increasing the visibility of the problem in the eyes of the

government, professionals and people in general (Austin & Werner, 1976; Stein, 1981).

Clearly, with the incidence of cerebral palsy on the rise and advanced medical technology

enhancing survival, families, schools and social service professionals will need to be

equipped to anticipate the social and emotional needs of these young people affected by

cerebral palsy in order to promote the best possible outcomes.

Definition of Terms

Cerebral Palsy = a chronic condition affecting body movement or muscle coordination

(physical and/or speech) caused by damage to the brain, usually during infancy or early

childhood. While determining the exact severity of the disability is subjective at best, this

8

9

study attempted to develop a range of scores that would incorporate aspects of actual

physical and medical involvement as well as the perceptions of disability severity by the

parent/care giver, the interviewer, and the youth him or herself To assist the reader, some

basic guidelines of the three most common categorical definitions are provided:

Mild = there is difficulty or discomfort or restriction in performing or an inability

to perform strenuous activities but not everyday activities or there is a slight limp

or use of minor aides or there are minor dietary restrictions (Rutter, Tizard &

Whitmore, 1970)

Moderate = there is difficulty or discomfort or restriction in performing or an

inability to perform ordinary activities or there is a marked limp or use of [assistive

devices] or there are major dietary restrictions such as diabetic diet or the

exclusion of whole classes offood (Rutter, et aI., 1970)

Severe = substantial regular help needed with dressing, washing, feeding and/or

special transport and accompanying person needed (Rutter, et aI., 1970)

Social Competence = how well an individual is able to function with others (Simmons,

Corey, Cowen, Keenan, Robertson & Levinson, 1985)

Self-esteem = how an individual perceives his or her own worth (Bone, 1995)

Behavior Problem = behavior considered atypical due to frequency, intensity and/or

duration deviating from relative social norms and occurring across settings, situations and

time; excesses, deficits and/or situational inappropriateness continues at an unacceptable

level subsequent to intervention (Gresham, 1985).

Assumptions of the Study

This study assumes that the constructs of self-esteem and social competency are

identifiable and modifiable traits and that the reports used in their identification are valid.

10

The discrepancy found in previous studies is due in part to the lack of large

subject samples that would be representative of the general population. The total number

of subjects with cerebral palsy employed in earlier studies ranges from 5 to 60. The use of

many different age and disability groups, and the use of many different instruments to

assess both behavior and self-esteem has also contributed to inconsistent results.

Limitations of the Study

1. A significant portion of the population of adolescents who have cerebral palsy

were not available for inclusion in this study due to the lack of severity of their disability

or the lack of access to social service agencies. There is also some level of difficulty in

diagnosing cerebral palsy as a condition under some circumstances so not all potential

subjects would even be aware of having the specified condition.

2. The determination of disability severity is subjective. Cerebral palsy is not an

easily described or defined condition. The inter-rater agreement on the type and severity

of the disability itselfhas been reported as being as low as 50%, even among clinicians

with expertise in the field (Blair & Stanley, 1985). Some studies (Crichton, et aI. , 1995)

have attempted to label the types of cerebral palsy according to four categories identified

by Crothers and Paine (1959) as follows: 1) spastic quadriplegia and diplegia, 2)

hemiplegia and monoplegia, 3) athetosis and 4) other/miscellaneous. These medical

classifications identify in what wayan individual is affected but do not delineate the

11

severity of the condition. However, there are no clear dividing lines between mild,

moderate or severe affects. All methods of classification of different types of CP rely on

'fine clinical judgement' and people with similar disabilities might be categorized in

different ways (Mutch, 1992). The present study attempted to develop a range of scores

based on actual physical and medical involvement as well as perceived severity of the

condition from the individual' s, the care giver's and the interviewer's viewpoint.

3. This study utilized a restricted, voluntary, and non-random sample of subjects.

Due to the low incidence of the condition of cerebral palsy, obtaining a random sample

was not practical. Subjects who volunteered for participation in this study were self­

selected and therefore likely to have different characteristics than people who are not

inclined to volunteer for such projects.

4. It was further recognized that any measure of social competence or behavior

developed with healthy, non-disabled subjects in mind does not take into consideration

environmental barriers to social activity that people with chronic physical health conditions

face (i.e. transportation, building accessibility, etc.) and that scores may be unduly

influenced by such factors.

Conclusion

This study is significant within three conceptual domains: theory, practice, and

service delivery. In reference to theory, the present study may provide support to those

who perceive the population of adolescents with cerebral palsy as unique in their social

and behavioral adjustment needs and may provide additional information relating to

adjustment issues within this population. Through the use of an epidemiological approach

and standardized assessment tools, this study allows for expansion of theories and

increased generalizability regarding children and adolescents with cerebral palsy.

12

The present study may also assist the clinician in practice. Given the

acknowledgment of adjustment issues within this population, the clinician, school

counselor and/or human service provider may utilize mental health concepts within

treatment. While technology, physical and occupational therapies and other medical

approaches to treatment will have an impact on the quality of life lead by the child with

cerebral palsy, mental health approaches must not be overlooked. Research has suggested

that "the goal for families with disabled children and youths is socialization for normalcy,

with a realistic understanding of physical limitations imposed by the disability" (Resnick, et

aI., 1987, page 799). The incorporation of typical social skill learning and practice in all

treatment and activity is crucial to the health of the affected youth.

Finally, the present study will provide information to families and those who plan

services for people with developmental and physical disabilities such as cerebral palsy.

Upon acknowledging the presence of social and behavioral adjustment difficulties within

this population as well as the positive self-esteem many youth maintain, services can be

directed to meet the social and behavioral needs of these adolescents. These supports and

services might include changes within the school and family home, such as inclusion on the

chore roster, enrollment in clubs, increased choice making, etc., or within the community

at large, such as equal access to recreation programs at the local Y.

Chapter 2

Literature Review

Early Studies - 1950's-1960's

13

In the 1950's, as medical research regarding cerebral palsy was beginning to be

better coordinated and United Cerebral Palsy affiliate agencies were being formed by

families and professionals around the country, the goals were to better understand the

complex condition, educate the public, focus on prevention and advocate for services

(Condeluci, 1989). A number of studies were conducted that painted a gloomy picture of

the emotional status and prognosis for people who had CPo Denhoff & Holden (1954)

found nearly 1/3 of35 preschool children with cerebral palsy had significant emotional

and/or behavioral disorders. Studying adults who received vocational training services in

a sheltered workshop setting, Glick (1953) reported that 75% of 150 adults with CP had

emotional maladjustments significant enough to prevent obtaining employment. In

another workshop setting, Jones & Maschmeyer (1958) found 80% of250 adults with CP

to exhibit immature work attitudes, immature social attitudes and poor work habits.

Likewise, in similar sheltered settings, Storrow & Jones (1960) found 48% of74

adolescents and adults with CP to manifest symptoms of psychiatric illness and an

additional 34% to exhibit emotional disturbance significant enough to interfere with

rehabilitation programs (though not severe enough to warrant a psychiatric diagnosis).

Later, Graham & Rutter (1968) conducted a total school district population study of

nearly 12,000 school aged children and found that 6.8% in that general population

displayed psychiatric disorders. That same study also noted that children diagnosed as

14

having brain-based disabilities that were organic in nature, including epilepsy and cerebral

palsy, had the highest rate of psychiatric disorders at 34.3%.

Role of Family Attitude

It is important to remember that these earlier studies were conducted primarily

with groups of people still separated from mainstream society. Few supports were

available for families, expectations of people with different physical and mental

development were low, choices related to education, housing and employment were few

and little information was available about innovations like adaptive forms of

communication. The studies began to describe different therapeutic interventions but

usually contained the common underlying theme that continues throughout the literature

today: If parents and siblings are involved, understanding, accepting, and have a positive

attitude about the child's and family'S circumstances relating to the disability, the child

who has the disability appears more confident and well adjusted (Denhoff & Holden,

1954; Koch, 1958; Tyler & Kogan, 1965; Brassel, 1977; Minde, 1977; Resnick, et aI,

1987; Wallander & Varni, 1989; Blum, 1991; Howe, Feinstein, Reiss, Molock, & Berger,

1993). These studies caution, however, that family attributes alone are not totally

responsible for an individual's problems and competencies.

Each of the above studies have suggested that a number of additional factors,

internal and external, play key roles in a person's social and emotional adjustment.

Professionals providing services to this population are urged to incorporate psychological

as well as physiological components in their treatment programs to address and prevent

maladaptive behavior (Hourcade & Parette, 1984).

15

Societal Shift - 1970's and Beyond

As societal attitudes shifted, study populations could be found within more typical

community settings. Teplin, Howard, & O'Connor (1981) noted that young children, ages

4-8, who had cerebral palsy and normal intelligence, showed no evidence of stigmatizing

or social isolation. He reported no difference in self concept scores between these and

matched group children, even into the early elementary years where he noted children

sense their differences, the permanence of their disability and possibly some peer rejection.

Minde (1977) conducted a longitudinal study of34 children starting at ages 2-6 and

lasting until ages 10-14. He concluded that children with CP exhibited an increased

amount of psychological difficulty in early adolescence and had limited familial or

community resources to turn to for educated support at that time. He determined that

90% of the children's families initially felt well supported by each other, friends and the

medical professionals but eight years later, only 50% still indicated that they had someone

to share concerns with. By the time the children were in their pre-teenage years, twelve of

the couples told of giving up attempts to obtain guidance and support from their

physicians. Over the course of time, parents had become less hopeful about their child's

future and in the final study, 60% had no idea what their child thought about his or her

disability and stated they never mentioned it in front of the child. They indicated they did

not yet think about their child's occupational or personal future and believed that their

children never thought of it either.

As researchers question adolescent difficulties, studies tend to use the method of

comparing disability groups to each other. Wallander & Varni conducted 3 studies in

z

16

1989 depicting family, and particularly the mothers' roles in social adjustment and found

that variance in mental and social functioning of 6-11 year olds with a range of chronic

physical disorders was explained by features of the social environment, in particular the

mother's psychological and utilitarian adjustment. Howe, et aI. (1993) compared children,

ages 12-18 with chronic conditions to "healthy" peers and found that children with brain­

based neurological impairments, like CP, had a greater chance of behavior problems, less

autonomous behavior, and decreased school achievement. Hirst (1989) found that teens

with CP or spina bifida are prone to poor psychological adjustment based on restricted

choices, physical barriers, and other adverse societal reactions, not based on their

functional limitations. However, Magill & Hurlbut (1986), Resnick & Hutton (1987) and

Blum, et aI. (1991) each report that adolescents (age 12-22) who have cerebral palsy

consistently score the same as their non-disabled peers in measures of self-esteem.

There is discrepancy among these studies as some (Magill & Hurlbut, 1986) find

an exception within the female population who seem to score lower and others (Howe, et

aI., 1993) who find that males score lower and are likely to have more adjustment

problems. Kibele (1989) and Becker & Schaller (1995) have found that in studies of

adults with cerebral palsy, lower self-efficacy scores were related, again not to the fact

that a disability existed but rather, to the limited amount of perceived financial resources,

lack of trained medical professionals, lack of accessible transportation and community

resources, lack of purposeful activity, lack of social interaction and general attitudinal

barriers existing in the community. Stacey, Doleys & Malcolm (1979) and Wadsworth &

Harper (1993) emphasize the social opportunity portion of that equation as crucial for

>

>

17

positive adjustment.

In Kokkonen, Saukkonen, Timonen, Serlo & Kinnnunen's (1991) study of

outcomes for children with disabilities as adults, it is again cautioned that most previous

work is based on populations drawn from hospital or rehabilitation settings. This new

work related to community based situations and family adaptation. They found the

divorce rates significantly higher for the families of youth with disabilities than for their

non-disabled control group. Two-thirds of the these divorces also occurred during the

subjects' adolescence. They found that poor social progress did not relate to the severity

of the disability but rather, environmental factors and parental attitude (i.e. over­

protectiveness) and suggested a need for "active separation" while the youth is living at

home. They asserted that parents can become "mutually dependent" in their need to

constantly provide for a dependent child, thus keeping the child dependent. The quality of

life for those who achieve independence (move out of the family home as adults) was

much higher than those adults who remained living with their parents and, in fact, those

remaining at home considered their life style to be unnatural. McCuaig & Frank (1992)

found that the choices made by a person with severe physical limitations may depend on

that individual's desire to be perceived as able, especially mentally competent.

Child and adolescent sample studies document that both social support and

environmental stress have significant linkages with self-esteem and emotional adjustment

(DuBois & FeIner, 1994). The goal of psychosocial treatments with children is to

intervene at all levels (behavior, family, biology, school, etc.), enhance self-understanding,

and positively facilitate development. The challenge is to classify subjects by

f

>

18

developmental level, not necessarily chronological age, and develop corresponding

treatments, keeping parents involved beyond the initial referral and assessment (Hibbs,

1995). Family care givers play the most significant role in both seeking out and following

through on therapeutic approaches deemed beneficial to a child's physical and mental

health. However, a study conducted in 1993 found that therapies to be carried out at

home by parents had a compliance rate of 50% or less. Compliance was not related to

severity of the disability, however, the longer term the therapy, the lower the compliance

rate (Law & King, 1993). The past several decades have seen gradual transformation in

the relationship between parents and professionals. Ross & Thomson (1993) conclude

that professionals must 1) involve the parents in the planning and implementation of any

treatment; 2) increase parents' confidence and reinforce their vital role in the therapeutic

process; and 3) integrate therapy with all activities of daily living so therapy becomes part

of daily life and normal play, not something to do in addition to the typical day's routine.

According to a survey conducted in 1991 to determine the most utilized

psychological test battery tools preferred by clinical psychologists to measure adjustment,

the Achenbach Child Behavior Checklist was in the top 15 of most frequently used

instruments for the adolescent population (Archer, Maruish, Imhof & Piotrowski, 1991).

More recently, Pilowsky (1995) also conducted a review of the literature pertaining to

special populations and particularly those receiving foster care services and found the

Child Behavior Checklist to be the most commonly used behavior assessment and social

adjustment tool. (Ner 1700 published studies have utilized the Achenbach Child Behavior

Checklist (CBCL) and/or Youth Self-Report(YSR) (Brown & Achenbach, 1996). A

19

thorough review of the literature reveals that five of these studies pertained to children and

adolescents who have cerebral palsy. One of them is available only in German and is not

cited here. The other four are listed in the summary of related literature found in Table 1.

Table 1 also provides an overview of the literature specifically related to studies of

social adjustment conducted on children and adults with cerebral palsy and other

conditions. This table shows 19 studies conducted over the last twenty years, the variety

of assessment tools utilized and the discrepancies in the results of the research. The tools

most frequently used were the Achenbach Child Behavior Checklist (five studies) and the

Rosenberg Self-Esteem Scale (four studies). These tools were employed in the present

study with an additional semi-structured questionnaire applied to account for components

unique to this population that these assessment approaches might not adequately identify.

Table 1 Review of the Literature Author(s)/ Subject Disabilities/ Results Assessment Date/Sample size Ages Tool(s) Minde, 1977 cerebral palsy as time passed, families experienced less Formal interviews N=34 3-7; 10-14 yo medic/soc support; early adolescence

longitudinal study brought increased psych difficulties based on limited family/community resources

cerebral palsy 4-8 years old

no self-concept difference when compared to matched controls

Purdue Self Concept Scale For Preschoolers

Teplin, Howard O'Connor, 1981 N=15 Coopersmith Behavior Rating Scale

Karton-Kant, 1984

Magill & Hurlbut 1986 N=44

cerebral palsy adults

cerebral palsy 13-18 years old

Magill-Evans, Restall cerebral palsy 1991 (follow up) 18-23 years old N=39

Resnick, Hutton 1987 N=60

cerebral palsy 12-22 years old

attributions of effort and ability are related to severity of condition and success/failure history more than to self-esteem

no significant difference in self-esteem scores between disabled and non-disabled except that females with CP had lowest overall scores

still no significant difference and female scores no longer lower - this attributed to increase in work and leisure opportunities

Rosenberg Self-Esteem Scale Vineland Social Maturity Scale

Tennessee Self-Concept Scale

Tennessee Self-Concept Scale

lower self-esteem present but not related to severity Rosenberg Self-Esteem Scale of disability; best predictors were chores, friends, Open-ended Questionnaire parental overprotectiveness, higher level of normal daily activity, social interaction and comm. resources

20

Table 1 (cont'd) Author(s)l Subject Disabilities/ Date/Sample size Ages Wallander, Hubert cerebral palsy 1988 spina bifida, 4-16yo

Wallander, Varni, Babani, Banis, Wilcox, 1989 N=153 (cp=17)

Hirst, 1989 N=119

Kibele, 1989 N=5

Sherrill, Hinson, Gench, Kennedy, Low, 1990 N=158 (cp=52)

cerebral palsy diabetes, obesity hemophilia, arthritis, spina bifida, 4-16 yo

cerebral palsy spina bifida adolescents

cerebral palsy adults

cerebral palsy, spinal cord injury, amputation, blind, dwarfism, 9-18 yo

Blum, Resnick, cerebral palsy Nelson, St. Germaine spina bifida 1991 12-22 years old N=102 (cp=60)

Results

increased support necessary from BOTH family and friends (not just one group or other)

child's psychological adjustment relates to mother's psychological functioning and family resources

poor psychological adjustment associated with social isolation, not functional limits. Problems include restricted choices, physical barriers, and others' adverse reactions

positive attitudes associated with purposeful activity and interaction with others

disabled youth athletes self-concept scores were no different than able-bodied youth - reportedly due to heavy involvement in regular sports activity

Assessment Tool(s) Achenbach CBCL

Achenbach CBCL Family Environment Scale Formal Questionnaire

Formal Questionnaires .

Case studies Formal Interviews

What Am I Like? (Harter)

chores, parental overprotectiveness, friendships, Rosenberg Self-Esteem Scale and future hopes (in that order), are best predictors Offer Self-Image Inventory of self-esteem

21

Table 1 (cont' d) Author(s)/ Subject Disabilities/ Results Assessment Date/Sample size Ages Tool(s) Arnold, Chapman cerebral palsy, no difference in self-esteem compared to Rosenberg Self-Esteem Scale 1992 spina bifida, asthma, non-disabled regardless of physical disability "Your Future" Questionnaire N=15 (cp=6) 'medically fragile' 15-18yo

Barakat, Linney, '92 spina bifida N=29 6-11 years old

Wadsworth, Harper, 1993

Howe, Feinstein, Reiss, Molock, Berger, 1993 N=165 (cp=24)

cerebral palsy adolescents

cerebral palsy, cystic fibrosis, arthritis, diabetes, epilepsy, spina bifida, 12-18 yo

child adjustment related directly to maternal psychological adjustment

adjustment difficulties correlate with social skill deficits and lack of opportunity to observe and practice age appropriate interactions

presence of neurological condition leads to greater chance of behavior problems, less autonomous behavior, lower school achievement, and difficulties in adapting to the stresses of adolescence; males had lower self-esteem scores.

Achenbach CBCL Vineland Adaptive Behavior Scale

Literature Review

Achenbach CBCL Offer Self-Image Questionnaire Child Depression Inventory WISC-R

Guralmick, 1994 cerebral palsy, mothers' perceived benefits and drawbacks to Achenbach CBCL

Becker, Schaller 1995 N=28

spina bifida, preschool mainstreamed early intervention

cerebral palsy adults

people with CP rated their abilities to be lower than Self-Related Abilities Scale other disability groups and related this to lack of General Self-Efficacy Scale training/social experience & disabled role models

Noojin, Wallander 1995 N=48

mothers of children with cerebral palsy, spina bifida

measured maternal mental and physical health related to caring for children with disabilities to support new measure of care giver stress

Revised Conners Behavior Checklist Parents of Children with Disabilities

Inventory

22

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23

Review of Assessment Tools

This study used the 1991 Achenbach Child Behavior Checklist (Appendix A) and

Youth Self Report (Appendix B) as the primary measurement tools. There is extensive

data on reliability and validity. These tests have been used on many populations including

youth with cerebral palsy and other disabilities. This tool was designed specifically to help

determine which competencies reportable by parents discriminate between children who

are adapting well compared to children needing help for emotional! behavioral problems.

Both the Youth Self-Report (YSR) and parent's Child Behavior Checklist (CBCL) report

form were utilized to better coordinate data and identify agreements and disagreements.

Achenbach stresses the need for obtaining data from multiple sources for several reasons:

1) Children's observable behavior, competencies, and problems are likely to differ from

one context to another; 2) different informants are likely to report on different samples of

behavior; and 3) informants differ with respect to their sensitivity to various aspects of

functioning (Achenbach, 1991a).

In reviewing advantages and disadvantages of rating scales, Barkley (1990) stated

the following in regard to the Achenbach CBCL, YSR, and Teacher Report Form (which

is riot included in this study):

There can be little doubt that this is the most well-developed, empirically derived

behavior rating scale currently available for assessing psychopathology and social

competence in children. The item content is sufficiently broad to capture the

majority of internalizing and externalizing disorders, to assess social competence,

and to evaluate a diversity of psychopathological disturbances likely to present in

a

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24

clinical practice. The developers respect the fact that different types of

psychopathology exists for the different sexes at different age levels of children and

provide for this in scoring the instrument (pages 286-287).

Dorenbaum, Cappelli, Hons, Keene & McGrath (1985) found the earlier version of

the CBCL to be a good screening tool for maladjustment that could be included in a

professional's comprehensive assessment of children with epilepsy as it was

psychometrically sound, easily administered, time efficient, had standardized instructions,

and was useful in identifying psychosocial difficulties. Similarly, Rosenberg, Harris &

Singer (1984) found a strong relationship between scales of the CBCL and a measure of

severity of illness for adolescents with Tourette Syndrome and, importantly, the tool

demonstrated sensitivity to variation in the degree of dysfunction of those subjects. In

studying youth with behavior disorders, Gresham (1985), referring to the earlier test

version, stated that "the behavior rating scale that appears to have the best and most

extensive technical development is the CBCL" (page 498) with evidence for interrater

(mother vs. father) reliability, internal consistency, and test-retest reliability:

After evaluating the current revision of the CBCL, McConaughy (1993) stated

Innovations in the 1991 scoring profiles of the CBCL and YSR represent

important advances in multiaxial empirically based assessment. [Profiles] contain a

common set of eight empirically derived cross-informant syndrome scales as well

as more global scales for internalizing, externalizing and total problems. Findings

on reliability. and validity warrant considerable confidence in the syndrome and

•

25

global scale scores as measures of problem patterns reported by different

informers. Longitudinal studies demonstrated medium to large 3 year stabilities

for parent ratings and lower, but significant, predictive correlations between parent

and self-ratings on the same scales ... Findings have shown that the 1991 CBCL

problem sc·ales significantly discriminate between children classified as having SED

[severe emotional disorders] and LD [learning disabilities] (pages 304-305).

Perrin, Stein, and Drotar (1991) provide some helpful cautions in their critique of

the 1983 versions of the CBCL and YSR for use with a physically disabled population.

They suggest the domain of "social competency" is not comprehensive in that it measures

accomplishments rather than capacity and participation rather than facility in social

interactions. They suggest the scale be referred to as a "social functioning" scale instead.

They stress that these difficulties reflect problematic utilization of the instrument and data

interpretation rather than a weakness in the instruments themselves.

Again in 1995, they call the revised and refined 1991 CBCL and YSR an

extraordinary achievement providing reliable and valid assessment of frequently presenting

problems in children (Drotar, Stein, Perrin, 1995) however application weaknesses must

still be taken into consideration. The tests provide limited sensitivity in identifying less

serious behavior problems and contain difficulties in interpreting data concerning physical

symptoms. They remind the investigator to consider this bias in the physical symptoms

items. High scores pertaining to physical problems (which might be typically associated

with a physical disability) could result in misleading inferences about the level of

a

-

26

psychopathology in this population. Canning and Kelleher (1994) found that the CBCL

performed better than other measures but still performed poorly as a screening instrument

for emotional and behavioral disorders in a population of adolescents with chronic

conditions (cancer, bowel disease, cystic fibrosis) and related that to two factors : 1) most

disorders are internalizing disorders (Cadman, Boyle, Szatmari & Offord, 1986) and

screening tools tend to perform better for children with external, observable behavioral

difficulties, and 2) their previous findings show that children with chronic illnesses tend to

minimize self-reported distress (Canning, Canning & Boyce, 1992). They acknowledged

their small sample size in the critique of the CBCL and YSR but recommend inclusion of

good background history and physical examination in determining a child's needs and

diagnoses.

A secondary measurement tool was used to assess each youth's self-esteem. The

1962 Rosenberg Self-Esteem Scale (Appendix C) is an inventory used and validated

extensively with adolescents, including minority adolescents. This is a self-report measure

allowing the youth to rate statements as to how true they are for him or her thereby

measuring an attitude along a favorable-to-unfavorable dimension. A review of the

literature finds this 10 item test to be frequently used in the research pertaining to

adolescents who have cerebral palsy and other disabilities. The concept of high self­

esteem used in the Rosenberg Scale is that individuals respect themselves, consider

themselves worthy, feel about equal to others, recognize their limitations and expect to

grow and improve. The original sample for which the scale was developed consisted of

5,024 high school students from 10 randomly selected schools in New York State. One of

a

27

its greatest strengths is that it has since been conducted on a wide range of age groups

over the years. It correlates significantly with other self-esteem inventories such as the

Coopersmith Self-Esteem Inventory and correlates in predicted directions with measures

of depression, anxiety, and peer-group reputation, demonstrating good construct validity

(Fischer & Corcoran, 1994). Test-retest reliability has been found to be .85 (Silber &

Tippet, 1965). Both Kanton-Kart (1983) and Blum et al. (1991) found this assessment

instrument meaningfully correlated with other measures when used with people who were

severely disabled. Use of this instrument helped provide consistency between current and

previous study results.

Path Analysis Mediation Model

A multiple regression path analysis was used to test relations among the studied

variables. In path analysis, the data are analyzed to determine if they fit the estimated

model. It is important to point out that while a given set of data can never prove a model

to be true with absolute certainty, the statistical analysis provides increasing support for

the model if the data are consistent with the specified model (Cohen & Cohen, 1983).

According to Cohen and Cohen (1983), path analysis estimates a relationship

among exogenous variables (independent) and endogenous variables (dependent). Several

types of models can be estimated. One such model estimates direct and indirect effects of

the independent and dependent variables. As Baron and Kenny (1986) explain, mediating

and moderating variables account for the indirect effects of an independent variable on a

dependent variable . . Figure 1 shows path relationships between the Independent Variable

5

-

(Disability), Mediators (Competence Factors) and Dependent Variable (Problem Scores

and Self-esteem).

Independent Variable

Figure 1. Path analysis model.

Path c • Dependent Variable

A mediator is defined by Baron and Kenny (1986) as an intervening organism

28

between stimulus and response. In general, it is any variable that is able to account for the

relation between the predictor and criterion variables. Mediators explain how or why

specific effects occur.

In path analysis, testing an intervening variable can be done with a series of

regressions. Baron and Kenny (1986) provide the three equations to test for mediation:

The mediator is first regressed on the independent variable. Second, the dependent

variable is regressed on the independent variable. Third, the dependent variable is

regressed on both the independent variable and the mediator. Path coefficients are

represented by the standardized regression coefficients, or beta weights. Standardized

weights are used because of the variety of units of measures in the independent variables.

According to Baron and Kenny (1986), a given variable functions as a mediator when it

meets the following conditions:

&

-

1) variations in levels of the independent variable significantly account for

variations in the mediator (path a)

2) variations in the mediator significantly account for variations in the dependent

variable (path b)

3) when path a and b are controlled, a previously significant relation between the

independent and the dependent variable is no longer significant (path c)

Baron and Kenny (1986) emphasize that while finding that path c = zero would

provide strong evidence of a single mediator, the likelihood of this event is not realistic,

considering the complex, multiple causes of psychological phenomena. Therefore, a

realistic goal may be to significantly decrease path c rather than eliminate it.

29

The above conditions are utilized in Baron and Kenny's (1986) model to test for a

variable's mediation effect. If consistent with the model, there would be a significant

reduction in the relationship between the direct path from Disability Severity to Problems

and Self-esteem when the Activity, Social and School variables are controlled for in a

regression equation.

Formal Hypotheses

Using the conditions set forth above, the following hypotheses were tested:

Hypothesis 1: Disability severity is negatively related to Activity, Social and School

Competence scores (i.e. as disability severity increases, Activity, Social and School

Competence decreases).

Path a = DISABILITY --t ACTIVITY, SOCIAL, SCHOOL

30

Hypothesis 2: Disability severity is positively related to Problem scores and negatively

related to Self-esteem scores (i. e. as disability severity increases, Problem scores also

increase and Self-esteem scores decrease).

Path c = DISABll.-ITY -. PROBLEMS, SELF-ESTEEM

Hypothesis 3: Activity, Social, and School Competence scores assessed individually will

be related negatively with Problem scores and positively with Self-esteem scores (i.e. as

Activity, Social and School scores increase, Problem scores decrease and Self-esteem

scores increase).

Path b = ACTIVITY, SOCIAL, SCHOOL -. PROBLEMS, SELF-ESTEEM

Hypothesis 4: When Activity, Social and School Competence scores are controlled, the

relationships between first, disability severity and Problems and second, disability and Self-

esteem are reduced, showing Activities, Social and School Competence to serve as

mediators. New path c when controlling for the mediators =

Activities,

r Social, School

'" Disability Pathc Problems; • Severity Self-esteem

-

31

Summary

A review of the literature shows that as time has passed, opportunities for people

with disabilities to participate in non-segregated community schools, programs and

employment have become greater. The focus of most research has been on family

adjustment and particularly, the mother's mental health in relation to the additional care

giving role she is perceived to serve and its impact on her child who has a disability. Many

assessment tools have been used with different age groups and a wide variety of disabled

populations, most of it showing greater differences from the non-disabled population in

self-concept during the adolescent years. However, consistency has not been shown in

these studies as to the group(s) more at risk of poor adjustment (i.e. males vs. females,

severely disabled vs. mildly disabled, etc.) or if there is even a risk of social problems at

all.

The current study utilized a path analysis model. It incorporated scores from the

Achenbach Child Behavior Checklist and Youth Self Report as well as Rosenberg's Self­

esteem Scale which appeared to be the most frequently employed standardized tests for

this and similar populations. Using these tools with a modest sample size, this study

attempted to gather information about adolescents who have cerebral palsy and the factors

that influence self-esteem and behavior.

Chapter 3

Methods

32

This research was conducted with sponsorship from both United Cerebral Palsy of

Southeastern Wisconsin, Inc. and the Wisconsin Council on Developmental Disabilities

which provided a grant to reimburse each participating family $25 for their time and input

after completion of the surveys. The cash stipend was paid directly to the primary care

giver upon full completion of the surveys by both participants. The care giver signed a

stipend receipt for documentation required by the funding agencies (Appendix D) .

. Approval was obtained from the Marquette University Human Subjects Committee

prior to soliciting study participants. Letters explaining the research and requirements

(Appendix E) were sent to professional and family contacts throughout the state. Family

letters (Appendix F) were included in the m~iling so that these initial contact people could

forward this information to others without jeopardizing the confidentiality of their records.

The family letter was also placed on a Wisconsin based Internet mailing list for families of

children with special health care needs. All notices asked that families begin the process

by contacting the researcher directly via a toll-free number. The family was then screened

during the initial phone call to assure that they met study requirements:

1) the adolescent was between ages 12-18 and had a diagnosis of cerebral palsy

and had not been diagnosed as having cognitive disabilities;

2) he or she resided in Wisconsin with at least one primary care giver;

3) both the adolescent and the primary care giver were willing to complete the

confidential survey tools during an hour long meeting with the researcher.

s

33

When the eligibility requirements had been assured, a meeting time, date and place was

scheduled. Families were given a choice of meeting locations and all families preferred to

meet in their homes.

Participants

Thirty-one male and twenty-nine female adolescents between the ages of 12-18

and their primary care givers were recruited utilizing the network associated with United

Cerebral Palsy Association affiliates throughout Wisconsin, medical and therapy clinics,

schools, social service agencies, and parent support coalitions. The youth were required to

have a diagnosis of cerebral palsy without a diagnosis of cognitive disabilities. Fifty-one

(85%) of the sample were of Caucasian background, while seven were African American,

one was Asian and one Eurasian. The latter nine made up the remaining 15% non-white

sample.

Materials Used in the Study

Demographic and Child Health Information Survey (1997)

A five page Demographic and Child Health Information Survey (Appendix G) was

completed by the care giver during the home visit and served multiple purposes. The first

page contained demographic information pertaining to the parents' education, marital

status, household income, geographic location, number of siblings living at home and any

siblings who also had a disability. This information was analyzed using descriptive

statistics to describe the characteristics of the population being studied.

Page two began with a subjective question regarding the care giver's perceived

severity of the youth's cerebral palsy (i.e. mild, moderate or severe impairment). This was

n

34

followed by two pages consisting of 18 items (numbered 17-34) adapted from the

Severity of Physical Handicap rating scale (Rutter, Tizard, & Whitmore, 1970). The

parent rated the child's level of functioning in the areas of everyday activities, motor

ability, dietary needs, etc. A rating of severity of the youth's disability ranging from 1-15

was obtained from these items and was added to the care giver's, the youth's and the

interviewer's disability level ratings of mild (1 point), moderate (2 points) or severe (3

points). These raw scores were converted to z scores to assure equal weight to each of

the measures. The Total disability severity score was the sum of these four z scores.

The fourth and fifth pages of the Information Survey contained several open-ended

questions relating to the youth's future and perceived coping abilities and any significant

obstacles or problems the family found in their environment. This information is intended

for use in future studies.

Achenbach Child Behavior Checklist and Youth Self Report (1991)

The primary tools used to measure the study's hypotheses were the Achenbach

Child Behavior Checklist (1991) designed for parents to complete regarding their child's

competence and behavior and the Youth Self Report (1991) designed for the youth to

provide his or her own observations regarding the same content. The process consisted of

a standardized checklist assessment containing both Competence Scales and Problem

Scales. Each tool took approximately 20 minutes to complete. The Competence Score

consists of three scales (Activities, Social and School) that are scored from the

competence items' scores on the first two pages. The "Activities" scale consists of scores

for the number of sports, jobs and chores reported plus mean scores based on ratings of

=

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35

how often and how well the youth completes those activities. The "Social" scale consists

of scores from participation in organizations, number of close friends, frequency of

contacts with friends, how well the child gets along with siblings, other children and

parents, and how well the child plays and works alone. Finally, the "School" scale

consists of scores for performance in academic subjects, placements in remedial classes or

schools, grade repetition and additional school problems.

The last two pages of the Child Behavior Checklist (CBCL) and Youth Self

Report (YSR) contain a list of 112 behavior problems answered "not true", "somewhat

true" or "very true" (scored 0, 1, and 2 respectively). A Total Problem score is obtained.

These scores also factor into eight syndrome scales which yield two broad-band groupings

across age and sex groups. They are labeled Internalizing factors (i. e. Somatic

Complaints, Withdrawn, AnxiouslDepressed) and Externalizing factors (i.e. Aggressive

Behavior, Delinquent Behavior).

Rosenberg Self-esteem Scale (1962)

The Rosenberg Self-esteem Scale contained ten items answered by the youth on a

four point scale from strongly agree to strongly disagree. The test was easily administered

and took less than five minutes to complete. The range of possible scores is from 10 - 40.

Youth Questionnaire (1997)

The Youth Questionnaire (Appendix II) was designed for this study and was the

final survey tool used to assess the youth's ideas about having a disability. It contained 6

questions, only one of which was utilized for the present study. This question asked if the

youth considered his/her disability to be mild, moderate or severe and was scored 1, 2 or 3

•

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36

respectively. This score was utilized first singularly as the youth's perception of disability

and second in combination with the care giver's rating, the interviewer's rating and the

Severity of Physical Handicap index score. Those four scores were standardized into z

scores and summed to yield the Total disability severity score.

Procedure

All data was gathered over a period of 90 days. At the time of the home visit, the

researcher gave an overview of the study to the participating adolescent and primary care

giver. An Informed Consent Form (Appendix I) was explained and signed by both

participants.

Aside from the hour spent completing questionnaires, no other discomfort or risk

was associated with this study. Questions were allowed at any time prior to or during the

interview and the researcher could be contacted any time after the home visit if the family

found a need to discuss issues arising out of study participation. Two parents contacted

the researcher inquiring about information related to depression and/or social concerns.

Information and referrals were provided.

As the investigation began, the care giver received the Demographic and Child

Health Information Survey (1997) and the Achenbach Child Behavior Checklist (1991) to

complete independently and without input from the youth. Meanwhile, the adolescent and

the researcher were in a separate area where the adolescent completed the Youth Self

Report (1991) , the Rosenberg Self-Esteem Scale (1962) and the Youth Questionnaire

(1997).

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37

All surveys were completely confidential and coded numerically by family

beginning with 101 and ending with 160 . Youth and care giver were not able to see each

other's reports. Three of the care givers were fathers, one was a grandmother, one had

been the foster mother for over ten years, three were adoptive mothers and the remaining

fifty-two were birth mothers.

In the four families where the adolescents were siblings or twins who both had

cerebral palsy, the surveys were consecutively numbered and contain an * or **

respectively on their form. This was coded in the event that further analysis is desired in

the future. Their care giver was asked to complete both surveys separately for each youth

and each youth completed his or her own battery. These situations took more time and

the stipend was doubled to account for each of the adolescents participating.

Upon completion of the surveys, the researcher checked for any incomplete items

or responses indicating cause for concern requiring immediate attention (i.e. "I think about

killing myself'). No items of major concern were noted. The respondents were asked to

complete any items left blank. Participants then had the opportunity to ask any additional

questions and the researcher provided resource information with referrals made as

appropriate.

Scoring

The CBCL and YSR were scored on a personal computer utilizing the

computerized Cross-Informant Program (Arnold & Jacobowitz, 1993) designed

specifically for these tests. Data were entered by the researcher for each survey

completed. The program required data to be entered two separate times for each subject . .

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38

to assure accuracy of keyed information. Output yields scores from both the CBCL and

YSR (1991) on each of the Competency Scales (i.e. an Activities Score, a Social Score

and a School Score). It also displays scores for Behavior Scales providing a Total

Problem Score plus sub scale scores for both Internalizing Problems (Somatic Complaints,

Withdrawn, Anxious/Depressed) and Externalizing Problems (Aggressive, Delinquent).

The Rosenberg Self-Esteem Scale (1962) was utilized as a secondary test for the

youth and was hand scored by the researcher. The scale produced a wide range of scores

by a simple totaling of the individual four-point items after reverse-scoring the negatively

worded items. The possible range was from 10-40 points with the higher number of

points indicating a higher self-esteem.

The adapted Severity of Physical Handicap Scale (1970) was also hand scored. A

maximum of 17 points could be obtained as a measurement not only of medical, physical,

speech, and other impairments but also inconvenience, disruption of daily and household

routine, and the overall picture of the care needs involved around the youth. The total

range of points scored in this sample was from 1-15 with the higher number of points

indicating a greater severity of disability. This was added to the youth's, care giver' s and

interviewer' s rating and transformed into standardized z scores for Total disability severity

scores.

Research Design

A multiple regression path analysis was used to establish relations among the

studied variables. According to Baron and Kenny (1986), investigation of a possible

mediator variable results from an assumption that the causal relationship between the

-

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39

variables is unknown. Regression equations were designed to test the following

conditions: 1) the variations in the levels of the independent variable significantly

accounted for variations in the mediator variables (i.e. lower activities, social and school

competence scores were related to higher disability severity scores - path a); 2) variations

in the mediators significantly accounted for variations in the dependent variables (i.e.

competence scores were related to behavior problems and self-esteem - path b); 3) when

path a and b were controlled, the previous relationship between the independent variable

(disability severity) and the dependent variables (problem scores and self-esteem) was

weakened (path c).

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Chapter 4

Results

Initial Analyses

40

The researcher provided assistance to 24 (40%) of the 60 adolescents by reading

the statements and recording their responses. T -tests showed no significant difference

between the assisted and non-assisted groups in any test score area. The one difference to

note was that the Total disability severity score was significantly higher for the assisted

group than for the non-assisted group (assisted n = 24, M = 1.92, non-assisted n = 36,

M = ~1.28,p < .001). This is easily explained as the youth with more severe limitations

were more likely to require assistance completing the forms.

In order to determine ifthere were differences based on gender, t-tests were

conducted on the following variables: Self-esteem, Total severity of disability, Youth

perception of disability severity, CBCL Problem Scores, CBCL Activity Scores, CBCL

Social Scores, CBCL School Scores, CBCL Internalizing Scores, CBCL Externalizing

Scores, YSR Problem Scores, YSR Internalizing Scores and YSR Externalizing Scores.

Females (n = 29, M = 47.10) scored significantly higher than males (n = 31, M = 32.74,

P <" .01) on the YSR Problem Scores. Likewise, females (M = 16.31) also scored higher

than males (M = 9.35,p < .001) on the YSR Internalizing Scores. Therefore, females

scored higher on self-report measures of Somatic Complaints, Withdrawn and

Anxious/Depressed items. Importantly, however, there was no significant difference

between genders on Self-esteem scores (male M = 32.94, female M = 31. 72, P =.38).

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41

In order to determine if variables were related to socio-economic status,

correlation analyses were conducted on the same variables as above. While a full range of

socio-economic groups were represented in this study, no significant relationship was

found between any variable and family income or geographic setting. Appendices J and K

show the range offamily income and the geographic location of the families respectively.

An analysis of variance was conducted with the youths' perception of disability

severity as the independent variable and self-esteem as the dependent variable. A Tukey

post hoc analysis determined that those perceiving themselves to have a severe disability

differed significantly in self-esteem from those perceiving a mild disability (E (2,57) =

4.97,p < .01). The youth who rated themselves as severely disabled had lower self­

esteem scores. Information regarding the disability rating scale results is provided in

Appendix L. Additional findings of interest that were not related directly to the main

hypotheses can be found in Appendix M.

Study Variables

The independent variable utilized in the hypothesized model was the Total severity

of disability score. As previously stated, a determination of this type is very subjective.

Four measures were combined to obtain a Total disability score: the Severity of Physical

Handicap rating scale (Rutter, et at., 1970) and the care givers', youths' and interviewer's

disability level ratings of mild, moderate or severe. These four raw scores were

standardized into z scores and summed for each subject (Appendix N). To account for

the lack of standardization due to the adaptations made to the rating scale and to assure

generalizability of the Total scale, a factor analysis was conducted. The items loaded

•

42

heavily onto one single factor, thereby indicating a dominant global factor, and showed a

strong level ofintemal consistency (Alpha = .83).

The dependent variables in the path analyses were CBCL Problems, YSR

Problems, and Self-esteem. CBCL and YSR Activities, Social and School scores were

tested as mediators for their respective test's Total Problem score (i.e. CBCL Activities

with CBCL Problems; YSR Activities with YSR Problems, etc.). Child Behavior

Checklist scores were correlated with Youth Self-Report Scores. All scales were

significantly correlated (Activities r = .43, P < .001 ; Social r = .42, P < .00 1; Total

Problems r = .42, P < .001 ;). Table 2 displays the descriptive statistics of these variables.

Table 2

Descriptive Statistics of the Main Study Variables

Variable M . Sll. Minimum Maximum Total Disability 0.00 3.24 -4.81 9.50

CBCL Problems 34.02 20.85 2.00 99.00

YSR Problems 39.68 22.34 7.00 99.00

CBCL Activities 3.78 1.82 .00 7.00

YSR Activities 3.58 1.63 .00 6.00

CBCL Social 4.85 . 2.13 1.00 9.50

YSR Social 6.04 2.05 1.50 9.50

CBCL School 3.78 1.51 1.00 6.00

Self-esteem 32.35 5.29 17.00 40.00

Note: N=60

Test for Mediation

Baron and Kenny's (1986) three regression equations were used to test for

mediation. Figure 2 indicates the equation and conditions required for each hypothesis.

Hypothesis

1) IV -t Med

2) IV -t DV

3) Med -tDV Med

4) /' " IV -t DV

Equation Condition

Mediator is regressed on IV Path a must be significant

DV is regressed on IV Path c must be significant

DV is regressed on both IV & Med Path b must be significant

Path c reduced to non­significance

Figure 2. Meeting the Conditions for Mediation.

Primary Analysis

43

Hypothesis 1 of this investigation tested the relationship between the independent

variable and the mediators. It proposed that Total disability severity was negatively

related to Activity, Social and School Scores (as severity increased, these competence

scores would decrease). Hypothesis 1 was supported in tests between Total disability

severity and both CBCL Activities scores (fi= -.55,p < .001) and YSR Activities scores

(fi= -.48,p < .001). As the disability severity increased, the Activities competence score

decreased. It was also supported in the test between Total disability severity and YSR

Social competence (fi= -.30, P < .05). As disability severity increased, self-reported

social competence decreased. The relationships between Total disability severity and

CBCL School competence (fi= -.06,p = .64) and CBCL Social competence

(fi= .06, P = .63) were not significant.

44

Hypothesis 2 tested the relationship between the independent variable and the

dependent variables. It proposed that Total disability severity would be positively related

to Problem Scores and negatively related to Self-Esteem Scores (as severity increased,

Problem scores would also increase and self-esteem scores would decrease). These

coefficients represent path c before the mediator is controlled. Hypothesis 2 was

unsupported in that no significant relationship was found between Total disability severity

and CBCL Problem scores (p= .00,p = .99), YSR Problem scores (p= .22,p = .09), or

self-esteem scores (p= -.19, P = .15).

Hypothesis 3 tested the relationship between the mediators and the dependent

variables. It stated that Activities, Social and School Competence scores would be related

negatively with Problem Scores and positively with Self-Esteem Scores (higher

Competence Scores would be related to lower Problem Scores and higher Self-Esteem).

Hypothesis 3 was partially supported. Both CBCL Social scores (p= -.32,p < .01) and

School scores (p= -.55, P < .001) were related to CBCL Problem scores as the

dependent variable. No relationship was found between the Youth Self-Report

Competence and Problem scores. There were also no significant relationships between

any of the CBCL or YSR Competence scores with Self-esteem as the dependent variable.

Hypothesis 4 tested the relationship between the independent variable and the

dependent variable when the mediators were controlled. It stated that when Activities,

Social and School Competence Scores (Mediators) were controlled, the relationship

between Disability Severity (Independent Variable) and Problems/Self-esteem (Separate

Dependent Variables) would be weaker than the relationship in Hypothesis 2, showing

45

Activities, Social and School competencies to be mediators.

Baron and Kenny (1986) require that when the mediator is controlled, a previously

significant relationship between the independent variable and dependent variable can no

longer be significant. Hypothesis 4 could not be supported as the relationship in path c

was not found to be significant in Hypothesis 2. Therefore, criteria for the mediation

model were not met. However, it can be noted that there was some reduction in the level

of the relationship between the independent variable and the dependent variables. Figures

3 -7 show each of the tested models with path c indicated from the final equation. The

pattern of path reduction was supported for the following mediators where Problem

scores was the dependent variable: CBCL Social (fromfJ= .00, p = .99 to fJ= -.02,

p = .86); CBCL School (from fJ= .00,p = .99 to fJ= -.04,p = .75); YSR Activities

(from {3= .22, p = .09 to fJ= .19,p = .20); YSR Social (from {3= .22,p = .09 to fJ= .21,

p = .13).

I Disability I

CBCL Activities

I CBCL Problems I

Self-esteem

Figure 3. Path analysis with CBCL Activities Competence Score as mediator. * = p < .001

I Disability

CBCL Social

I CBCL Problems I

Self-esteem

Figure 4. Path analysis with CBCL Social Competence Score as mediator * =p< .01

Disability I

CBCL School

I CBCL Problems I

Self-esteem

Figure 5. Path analysis with CBCL School Competence Score as mediator. * = p < .001

46

-

Disability I

YSR Activities

I YSR Problems

Self-esteem

Figure 6. Path analysis with YSR Activities Competence Score as mediator. * =p < .001

Disability I

YSR Social

I YSR Problems

Self-esteem

Figure 7. Path analysis with YSR Social Competence Score as mediator. *=p< .05

47

48

Secondary Analysis

In order to account for possible differences due to the youths' perception of the

severity of their disability, as opposed to the Total disability score, the analyses were also

conducted with the Youths' perceived disability scores as the independent variable in the

model. It was hypothesized that there may be a stronger relationship with the mediators

and dependent variables based on how the youth perceived his or her disability. In order

to be more specific about the Problem Scores, only Internalizing and Externalizing

Sub scale Scores were used as the dependent variables. Again, while some of the criteria

were met, none of the models fit Baron and Kenny's (1986) requirement for direct

mediation.

49

Chapter 5

Discussion

Summary and Integration of Findings

The primary hypothesis of this study proposed that a mediator effect could be

shown by introducing competence areas as interventions between disability level and

problems or self-esteem. While the model criteria were not met for the specified variables,

a number of relationships throughout the study were found to be significant. The first

hypothesis of this investigation proposed that as disability severity increased, Activity,

Social and School Competence Scores would decrease. This held true in the area of

Activities (sports, hobbies, clubs, chores) indicating that youth who are more severely

affected by cerebral palsy participate in significantly fewer activities but do not have

different social or school competence based on the degree to which they are disabled.

The second hypothesis assumed a relationship between disability severity and both

problem scores and self-esteem scores. Contrary to some earlier studies (Minde, 1977;

Howe, et al., 1993; Becker and Schaller, 1995) overall scores did not reflect any

difference in self-esteem or problems based on the severity of the disability. This finding

supports work conducted by Resnick and Hutton (1987), Hirst (1989) and Arnold and

Chapman (1992). The youth, however, did indicate a lower self-esteem if they perceived

their disability to be severe, whether or not others would rate it as such.

The third hypothesis addressed the relationship between the three competence

scores with problems and self-esteem. Low scores in the areas of Social and School

competence were strongly correlated with high Problem scores. This indicates a direct

50

relationship between a higher number of problems and lower Social competence (number

of friends, amount of contact, ability to get along with siblings, family members and

others) and lower School competence (academic performance, remedial placements, grade

repetition). Conversely, those adolescents with higher Social and School Competence

were therefore shown to have fewer problems. This has implications for families, agencies

and schools who can focus more attention in the areas associated with these factors.

While exhibiting behavior problems may be a deterrent to making friends and social

contacts, strengthening the social support circles of the adolescents with cerebral palsy

may lead to a reduction in problems.

Contrary also to the opposing studies by Magill and Hurlbut (1986) and Howe, et

al. (1993), no difference was found in the self-esteem between males and females. The

only area of difference between the genders was an increase in female self-reports of

problems, and specifically Internalizing Scores measuring somatic complaints, withdrawal,

anxiety and depression. Rugel (1995) suggests that the three main domains that account

for one's self-esteem are a sense of competence, social acceptability, and physical

appearance. A number of the males in this sample were reportedly compensating well for

their inability to participate in typical athletic activities by serving in other capacities on

teams (statistician, for example) and by taking a strong interest in computer and Internet

activities. Females, on the other hand, tended to show more concern over their

appearance and a feeling that 'boys would not want to date' them because they had some

'physical flaws'. While this feeling does not appear to have influenced general self-esteem

scores, it may account for higher female Internalizing scores.

51

The final, and main, hypothesis of this study projected that high scores in

Activities, Social and School Competence would mediate or intervene between the

relationship of disability severity with problems and self-esteem. Since there was no

significant relationship in Hypothesis 2 and the mediation criteria could not be met, this

final hypothesis was also unsupported. It is important to realize, however, that the overall

lack of significance between disability severity and most of the study variables is good

news. These youth could be described as stable, confident, and functioning positively in

society. There were also indications that both CBCL and YSR Social competence factors

as well as CBCL School and YSR Activities factors did play some role in reducing the

relationship between disability severity and Problem scores. Further analysis could

measure the degree of significance between these paths and perhaps employ measures

more appropriate to a population of youth with special health care needs.

It was recognized that the utilized measure of competence and behavior was

developed with healthy, non-disabled subjects in mind and did not take into consideration

environmental barriers to social activity that people with chronic physical health conditions

face. Perrin, Stein, and Drotar's (1991) cautions regarding the use of the CBCL and YSR

with a physically disabled population state "the fact that some children with a chronic

illness are unable to participate in certain social activities solely because of their condition

does not mean they are less socially competent" (pg. 416). They argue that these children

may compensate for the above inabilities by, for example, becoming expert in sports

information or artistic endeavors. While low scores on the Activities scales did not relate

to any elevated youth Problem scores or any reduction in Self-esteem scores, this research

52

clearly indicated that youth with more severe disabilities were far less likely to participate

in community and family activities. This may be due to personal physical constraints (i. e.

inability to be mobile or use arms independently) or due to environmental barriers such as

lack of transportation, lack of accessibility into public buildings or lack of community

program compliance with the Americans with Disabilities Act which would require that

accommodations be made to anyone requesting to participate in public social activities. It

may also be due to a lack of awareness of available opportunities. For example, three of

the female subjects expressed great disappointment in not being able to play the piano

because they had one weak hand. They were not aware that sheet music exists that can be

played with one hand and that music teachers are just one example of community members

who must be able to adapt their techniques to help young people of all abilities realize

their hopes and potential.

This study was unique in that all known previous studies of this type with this

population utilized only the Achenbach Child Behavior Checklist. The present study also

incorporated the Achenbach Youth Self Report and placed great importance on the

youths' perception of their circumstances. The strong correlation between the CBCL and

YSR scores indicates that either or both of the tests are valid for this type of study. It

could be argued that the youths' perception is more important than the care givers' in

some instances. However, one recommendation from this study is to conduct an item

analysis on a number of the behavior problem items. There were, for example, a large

number of youth who were moderately to severely physically disabled who answered "I

can work well with my hands" as "very true" when, to an outside observer, it was not true

•

at all. There are a number of additional items related to health conditions that may

artificially raise the Problem scores when, in fact, the item is a function of the disability

rather than a behavior problem per se (i.e. "Wets the bed").

Study Limitations

This study utilized a small number of non-random, volunteer sample subjects

53

(N = 60). Due to the low incidence of the condition of cerebral palsy, obtaining a pure

sample (only youth with CP) was extremely difficult. Obtaining a random sample was not

practical. The difficulty existed for several reasons. First, most early intervention services

do not track former therapy recipients or keep long-term records. Second, many therapy

clinics stated that they do not usually serve children after age 10 because the school

system is designed to provide for their needed services. Third, most school systems do

not identify children with disabilities unless they have a special education diagnosis of

cognitive disabilities. Fourth, and sadly, a number of school and therapy professionals

stated that they believed all of their students who had CP also had cognitive disabilities -

not because they had been tested, but because they assumed that mental retardation and

cerebral palsy went hand-in-hand. Finally, many of the families who did volunteer

indicated that they had 'outgrown' their need for the support group and agency

connections that they had relied on when their child was first diagnosed. This self­

sufficiency could be seen both as a positive sign of empowered families and as a sign of

frustration with a lack of support services designed to grow along with family needs.

Subjects who volunteered for participation in this study were self-selected and

therefore cannot be assumed to be representative of people who do not volunteer for such

I

54

projects. People who have membership in support groups and/or involvement in

therapeutic settings where notices regarding this study were posted are likely to have

greater exposure to information about their rights, greater awareness of activities that are

available to them and more opportunity to meet other people who have similar disability­

related experiences. They may be considered to be taking a pro-active stance toward their

children's development and may have pursued interventions that are regarded as

enhancing to their sons' and daughters' self-esteem and coping abilities.

The determination of disability severity was problematic. While attempts were

made to utilize standardized scores and be inclusive of many perspectives involved in

disabling conditions, there was some discrepancy between the youths' perceived disability

severity scores and the other three measures utilized. There appeared to have been a

number of youth who, by all other accounts, had quite severe disabilities, yet rated

themselves in the mildly disabled category. Conversely, a few of the youth who would

generally be viewed as very mildly disabled, rated themselves in the moderate or severe

categories. The manner in which a person perceives him or herself may be a much

stronger influence in major life functions than others' perceptions, even if the latter

appears more realistic. This is an important consideration in planning for and providing

services to any population. Refining the disability severity measurement would be an

interesting project to undertake.

Intervention Implications

Results of this study show trends toward possible interventions when assisting

young people with disabilities. The study clearly shows youth with more severe

E

55

disabilities at risk for exclusion from community and home activities, clubs, organizations,

and hobbies. It also shows lower Social and School competence to be related to behavior

problems in general. From a practical perspective, clinicians, school counselors, and

human service providers should be aware of the importance of incorporating mental health

practices, social skill and competence building activities into their service plans for these

youth along with their non-disabled peers. The service delivery system must be aware of

social and behavioral needs and be directed to change systems that support families and

school programs so that services are inclusive of all individuals and especially responsive

to those individuals with considerably more severe disabilities and/or care needs who

might otherwise not be able to participate with their siblings and peers in typical activities.

There also appeared to be a large gap in the services available to this teenage population.

As the school system's support ends and school friendships are less available, support may

be needed to assist the youth in transitioning successfully into an adult role.

From a theoretical perspective, this study has not shown an increased level of

problem behaviors or a lower level of self-esteem in adolescents with the physical

disability, cerebral palsy. This population, contrary to many beliefs, does not appear to

present unique adjustment challenges but rather should have all of the services, supports

and opportunities available to them that are available to their non-disabled peers.

Future Directions

This study supports some earlier findings in that it did not show an elevated level

of problems or self-esteem issues among the population of adolescents who have cerebral

palsy. Its intent is to dispel the myth that people who are different in appearance, mobility,

language or ability must therefore be unhappy with themselves and their circumstances.

On the contrary, the term that might best describe this sample population is resilient.

56

The present study is ideal as a basis for follow-up studies with the same population

as the youth grow into adulthood. Families were advised of this possibility and asked to

sign an address form (Appendix 0) if they were willing to be contacted in the future.

Every family indicated that they had been discouraged by the lack of information available

to them regarding self-esteem and social issues for their children with cerebral palsy and

all agreed to sign the form saying that they hoped to help provide other families and

professionals with important information in the future. This willingness of families and

young people to be involved iJ;1 the process of learning more about the impact of cerebral

palsy is a powerful message to researchers and social service agencies. We must not

forget the expertise of the people closest to the actual issues. There are clearly many

individuals willing to form partnerships with research and service providing entities.

Tapping those resources will make the work we do that much richer.

In addition to the data gathered for this study, the Information Survey and the

Youth Questionnaire contained many items regarding issues that will be used for

qualitative analyses in the near future. Care givers were asked to describe their greatest

needs, community barriers, and concerns that they had for their children. Many cited

respite or child care services. Some were interested in home modifications and supported

employment opportunities for their child as adulthood approached. Two of the care givers

asked for information about cerebral palsy and at what point their child would outgrow

the CP and begin to walk.

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57

Further research could apply a similar path analysis model with a more sensitive

measure of self-reported disability severity. Utilizing each of the eight distinct behavior

subscales from the Achenbach tests would also provide more specific information related

to the types of problems these youth are experiencing and the interventions most likely to

predict positive outcomes.

The direction offuture research should be aimed toward enhancing professionals'

understandings of how to support families with accurate information that follows them

throughout the lifespan. It should also encourage community responsiveness to the needs

of individuals in our society who have differing abilities. The ultimate goal of this type of

research is to achieve for all youth experiencing disabilities the type of social support

system that accepts and appreciates them in the way that one youth wrote as his feeling

about having a disability: "My friends don't look at me as being in a wheelchair. They

look at me as a whole person."

•

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Cohen, N.J., Gotlieb, H , Kershner, J. & Wehrspann, W. (1985). Concurrent validity of the internalizing and externalizing profile patterns of the Achenbach Child Behavior Checklist. Journal of Consulting and Clinical Psychology. 53(5), 724-728.

Condeluci, A. (1989). Empowering people with cerebral palsy. Journal of Rehabilitiation. AprillMay/June, 15-16.

Crichton, J.D., Mackinnon, M . & White, c.P. (1995). The life expectancy of persons with cerebral palsy. Developmental Medicine and Child Neurology. 37, 567-576.

Crothers, B. & Paine, RS. (1959). The Natural History of Cerebral Palsy. Harvard University Press, Cambridge, Massachusetts.

R

60

Denhoff, E. & Holden, RH. (1954). Family influence on successful school adjustment of cerebral palsied children. Exceptional Children. 2.1, 5-7.

Dorenbaum, D., Cappelli, M ., Hons, B.A., Keene, D. & McGrath, P .I (1985). Use ofa Child Behavior Checklist in the psychosocial assessment of children with epilepsy. Clinical Pediatrics. 24( 11), 634-637.

Drotar, D., Stein, RE.K. & Perrin, E.C. (1995). Methodological issues in Using the Child Behavior Checklist and its related instruments in clinical child psychology research. Journal of Clinical Child Psychology. 24(2) 184-192.

DuBois, D.L. & FeIner, RD.(1994). Socioenvironmental experiences, self-esteem, and emotionallbehavioral problems in early adolescence. American Journal of Community Psychology. 22(3),371-397.

Education of All Handicapped Children's Act of 1975. Public Law 94-142. November, 1975. 20USC 1401.

Fryers, T. (1984). The epidemiology of severe intellectual impairment: the dynamics of prevalence. New York: Harcourt Brace Jovanovich.

Fuhrman, T. & Holmbeck, G.N. (1995). A contextual-moderator analysis of emotional autonomy and adjustment in adolescence. Child Development. 66, 793-811 .

Glick, S. (1953). Survey of the adult cerebral palsied population.' Cerebral Palsy Review. 14,9-18.

Graham, P. & Rutter, M. (1968). Organic brain dysfunction and child psychiatric disorder. British Medical Journal. J., 695-700.

Gresham, P.M. (1985). Behavior disorder assessment: conceptual definitional, and practical considerations. School Psychology Review. 14(4), 495-509.

Guralnick (1994). Journal of Early Intervention. la, 168-183.

Hibbs, E.D. (1995). Child and adolescent disorders: issues for psychosocial treatment research. Journal of Abnormal Psychology. 23(1), 1-11.

Hirst, M. (1989). Patterns of impairment and disability related to social handicap in young people with cerebral palsy and spina bifida. Journal ofBiosocial Science. 21(1), 1-12.

61

Hourcade, J. & Parette, H.P. (1984). Cerebral palsy and emotional disturbance: a review and implications for intervention. Journal ofRehabilitiation. July/August/September, 55-60.

Howe, G.W., Feinstein, c., Reiss, D ., Molock, S. & Berger, K. (1993). Adolescent adjustment to chronic physical disorders: Comparing neurological and non­neurological conditions. Journal of Child Psychology and Psychiatry and Allied Disciplines. 34(7), 1153-71.

Jones, M. & Maschmeyer, J.E. (1958). Childhood aims and adult accomplishments in cerebral palsy. International Record of Medicine. 171,219-224.

Karton-Kant, M. (1984). The social competence, self-esteem, and causal attributions of cerebral palsied adults. Dissertation Abstracts International, 45(4) 1321-B.

Kibele, A. (1989). Occupational therapy's role in improving the quality oflife for persons with cerebral palsy. American Journal of Occupational Therapy. 43(6), 371-377.

Koch, F.P . (1958). A nursery school for children with cerebral palsy: Five-year follow-up study of thirteen children. Pediatrics. 22, 329-335.

Kokkonen, J, Saukkonen, A.L., Timonen, E., Serlo, W. & Kinnunen, P . (1991). Social outcomes of handicapped children as adults. Developmental Medicine and Child Neurology. 33, 1095-1100.

LaPlante, M.P. & Carlson, D . (1992). Disability in the Untied States, prevalence and causes, 1992. Disability Statistics Report #6, U.S. Department of Education, National Institute on Disability and Rehabilitation Research, 1995.

Law, M. & King, G. (1993). Parent compliance with therapeutic interventions for children with cerebral palsy. Developmental Medicine and Child Neurology. 35, 983-990.

Magill, J. & Hurlbut, N. (1986). The, self-esteem of adolescents with cerebral palsy. American Journal of Occupational Therapy. 40(6), 402-407.

Magill-Evans J.E. & Restall, G. (1991). Self-esteem of persons with cerebral palsy: from adolescence to adulthood. American Journal of Occupational Therapy. 45(9), 819-25 .

McConaughy, S.H. (1993). Advances in empirically based assessment of childrens' behavioral and emotional problems. School Psychology Review. 22(2), 285-307.

-

McCuaig, M. & Frank, G. (1991). The able self adaptive patterns and choices in independent living for a person with cerebral palsy. American Journal of Occupational Therapy. 45(3),224-34.

McNeil, lM. (1993). Americans with disabilities: 1991-92. U.S. Bureau of the Census Current Population Report P70-33. Washington, D.C.

Minde, KK, (1977). Coping styles of34 adolescents with cerebral palsy. Annual Progress in Child Psychiatry and Child Development. 677-690.

Molnar, G.E. (1992). Pediatric Rehabilitation. Williams & Wilkins, Baltimore Maryland.

Mutch, L. (1992). Cerebral palsy epidemiology: where are we now and where are we going? Developmental Medicine and Child Neurology, 34, 547-555.

Noonjin, AB. & Wallander, lL. (1995). Development and evaluation ofa measure of concerns related to raising a child with a physical disability. Journal of Pediatric Psychology. 21(4), 483-498.

Perrin, E.C., Stein, R.E.K & Drotar, D. (1991). Cautions in using the Child Behavior Checklist: observations based on research about children with a chronic illness. Journal of Pediatric Psychology. 16(4),411-421.

62

Pilowsky, D. (1995). Psychopathology among children placed in family foster care. Psychiatric Services. 46(9). 906-910.

Resnick, M.D. & Hutton, L. (1987). Resiliency among physically disabled adolescents. Psychiatric Annals. 11(12), 796-800.

Rogers, F. B. (Ed.). (1965). Studies in epidemiology: selected papers of Morris Greenberg. M.D. New York: G. P. Putnam's Sons.

Rosenberg, L.A, Harris, J.C. & Singer, H.S. (1984). Relationship of the Child Behavior Checklist to an independent measure of psychopathology. Psychological Reports. 54, 427-430.

Rosenberg, M. (1965). Society and the Adolescent Self-Image. Princeton University Press.

Rosenberg, M. & Simmons, R. (1972). Black and White Self-esteem: The Urban School .Gbil.d. Washington D.C.: American Sociological Association. Arnold M. and Caroline Rose Monograph Series.

Ross, K & Thomson, D. (1993). An evaluation of parents' involvement in the management of their cerebral palsy children. Physiotherapy. 79(8), 561-565 .

Rugel, R.P. (1995). Dealing with the problem oflow self-esteem. Charles C. Thomas: TIlinois.

63

Rutter, M., Tizard, l & Whitmore, K (1970). Education. health and behaviour. London, UK: Longwood.

Sherril, c., Hinson, M., Gench, B., Kennedy, S.O. & Low, L. (1990). Self-concepts of disabled youth athletes. Perceptual and Motor Skills. 70(3 Pt 2), 1093-1098

Silber, E. & Tippet, l (1965). Self-esteem: clinical assessment and measurement validation. Psychological Reports. 16, 1017-1071 .

Simmons, R.l, Corey, M., Cowen, L, Keenan, N., Robertsonn, l & Levison, H. (1985). Emotional adjustment of early adolescents with cystic fibrosis. Psychosomatic Medicine. 47(2), 111-122.

Stacey, D., Doleys, D.M. & Malcolm, R. (1979). Effects of social skills training in a community-based program. American Journal of Mental Deficiency. 84, 152-158.

Stein, Z.A. (1981). Why is it useful to measure incidence and prevalence? International Journal of Mental Health, 10, 14-22.

Storrow, HA. & Jones, M.H. (1960). Management of emotional barriers to rehabilitation in cerebral palsied adults. Archives of Physical Medicine and Rehabilitation. 41, 570-574.

Strohmer, D.C., Grans, S.A., & Purcell, M.l (1984). Attitudes toward persons with a disability: an examination of demographic factors, social context, and specific disability. Rehabilitation Psychology, 29, 131-145.

Teplin, S.W., Howard, lA. & O'Connor, M.l (1981). Self-concept of young children with cerebral palsy. Developmental Medicine and Child Neurology. 23(6) 730-738.

Tringo, lL. (1970). The heirarchy of preferences toward disability groups. Journal of Special Education, 1, 295-306.

Tyler, N.B. & Kogan, KL. (1965). Measuring effectiveness of occupational therapy. American Journal of Occupational Therapy. 19, 8-13 .

United Cerebral Palsy Research and Educational Foundation, Washington, D.C. (1996) Research Fact Sheets.

United Cerebral Palsy Research and Educational Foundation, Washington, D. C. (1997) Research Fact Sheets

Wadsworth, IS. & Harper, D.C. (1993). The social needs of adolescents with cerebral palsy. Developmental Medicine and Child Neurology. 35, 1015-1024.

64

Wallander, IL. & Varni, IW. (1989). Social support and adjustment in chronically ill and handicapped children. American Journal of Community Psychology. 11(2), 185-201.

Wolfensberger, W. (1972). Normalization. Toronto: National Institute on Mental Retardation.

Wolfensberger, W. (1983). Social role valorization: a proposed new term for the principle of normalization. Mental Retardation. 21(6),234-239.

APPENDIX A 65

CHILD BEHAVIOR CHECKLIST FOR AGES 4-18 I For office use only

10 #

Please Print CHILD'S FIRST MIDDLE LAST PARENTS' USUAL TYPE OF WORK, even if not working now, (Please FULL be specific-for example, auto mechanic, high school teacher, homemaker, NAME laborer, lathe operator, shoe salesman, army sergeant.)

SEX AGE ETHNIC GROUP FATHER'S

0 Boy 0 Girl OR RACE TYPE OF WORK:

TODAY'S DATE CHILD'S BIRTH DATE MOTHER'S

TYPE OF WORK: Mo. --- Date --- Yr. -- Mo. --- Oate ___ Yr. --

GRADE IN THIS FORM FILLED OUT BY:

SCHOOL --- Please fill out this form to reflect your view o ( fUll ) of the child's behavior even if other people

Mother name

o (fUll ) might not agree. Feel free to print additional Father name NOT ATTENDING comments beside each item and in the

o Other-n~U~e & relationship to child: SCHOOL 0 spaces provided on page 2.

I. Please list the sports your child most likes to take part in. For example: swimming , baseball, skat ing, skate boarding, bike rid ing, fishing , etc.

Compared to others of the same age, about how much time does helshe spend in each?

Compared to others of the same age. how well does he/she do each

II .

III.

IV.

o None

a.

b.

c.

o o o

Please list your child's favorik • 'activitles, and games, othl For example: stamps, dolls, b crafts, cars, singing, etc. (Do r, listening to radio or TV.)

o None

~ ~ Compared to others of the same

5 ' ~'acleS age, how well does he/she do each

~'. one?

-,::is More ~..- 'Than Average Than Don't Below Above ~ Average Average Know Average Average Average

a. ------------~~ b.

c.

Please list any organizations, clubs, teams, or groups your child belongs to.

0 None

a.

b.

c.

Please list any jobs or chores your child has. For exampl~: paper route, babysitting, making bed, working in store, etc. (Include both paid and unpaid jobs and chores.)

0 None

a.

b.

c.

o o o

o o o

o o o

o o o

Compared to others of tlle same age, how active is he/she in each?

Don't Less Average

More Know Active Active

0 0 0 0

0 0 0 0

0 0 0 0

Compared to others of the same age, how well does he/she carry them out?

Don't Below Above Know Average

Average Average

0 0 0 0

0 0 0 0

0 0 0 0

o o o

o o o

o o o

o o o

Copyright 1991 T.M. Achenbach, U. of Vermont, 1 S. Prospect St., Burlington, VT 05401 UNAUTHORIZED REPRODUCTION FORBIDDEN BY LAW 4-95 Edition

PAGE 1

V.

VI.

Please Print

1. About how many close friends does your child have? 0 None (Do not Include brothers & sisters)

o o 20r3 o 4 or more

2. About how many times a week does your child do things with any friends outside of regular school hours? (Do not Include brothers & sisters) 0 Less than 1 0 1 or 2 0 3 or more

Compared to others of his/her age, how well does your child:

Worse

, \

1er About Av' .

66

\ \

o Has no brothers or sisters

~/ ~ Get along with his/her brothers & sisters? a.

b. Get along with other kids?

c. Behave with his/her parents?

d . Play and work alone? .. ~ /O

\ \

./.

VII. 1.

5 ~t'ailing • Arts 0

.-------'

Check a box /,

a . .

b. Hi. _,udies

c. Arith .. .,(ic or Math

d. Science

Other academic subjects - for ex· e. ample: computer courses, foreign f. language, busi· ness. Do not in· g. _____________ _ clude gym, shop, driver's ed., etc.

2. Does your child receive special remedial services or attend a special class or special school?

3. Has your child repeated any grades?

o o o

o o o

o No

o No

4. Has your child had any academic or other problems In school?

When did these problems start?

Have these problems ended? 0 No 0 Yes -when?

O?es your child have any illness or disability (either physical or mental)?

What concerns you most about your child?

Please describe the best things about your C;hild:

PAGE 2

.~-----------------------------

Below Average

o o o o

o o o

Average

o o o o

o o o

Above Average

o o o o

o o o

o Yes-kind of services, class, or school:

o Yes-9rades and reasons:

o No o Yes-please describe:

o No o Yes-please describe:

o o

67

Below is a list of items that describe children and youth. For each item that describes your child now or within the past 6 months, please circle the 2 if the item is very true or often true of your child. Circle the 1 if the item is somewhat or sbmetimes true of your child. If the item is not true of your child, circle the O. Please answer all items as well as you can, even if some do not seem to apply to your child.

2 2

o = Not True (as far as you know)

1. Acts too young for his/her age 2. Allergy (descri be):

Please Print

Somewhat or Sometimes True 2 = Very True or Often True

o 2 31. Fears helshe might think or do something bad

o 2 32. Feels he/she has to be perfect o 2 33. Feels or complains that no one loves him/her

012 012

3. Argues a lot 4. Asthma o

o 2 34. Feels others are out to get him/her

o o

o o

o

0

0 0

0 0

0 0

0 0

0 0

0

0

0 0

0 0

0 0

o

o

2 2

2 2

2

2

2 2

2 2

2 2

2 2

2 2

2

2

2 2

2 2

2 2

2

2

5. 6.

Behaves like opposite sex Bowel movements outside toilet

2 35. Feels worthless or inferior

o 2 ~~ \ hurt a lot, accident-prone

7. 8.

9.

o ~ many fights

Bragging, boasting ~ '. . . lsed a lot Can't concentrate, can't pay attentIOn ff'- .

~ ·')und with others who get in trouble

Can't get his/her mind Of' ,

obsessions (descr;~ .. I\. ~ ......--rlarssounds or voices that aren't there

10.

11 . 12.

.r.- 5 ~ \_~,. :~: 2 ----- (descnbe):

~ 41. Impulsive or acts without thinking

G 2 42. Would rather be alone than with others o 1 2 43. Lying or cheating

13. 14.

15. Cruel to animals

16. Cruelty, bullying, or meanness to others

17. Day-dreams or gets lost in his/her thoughts 18. Deliberately harms self or attempts suicide

19. Demands a lot of attention 20. Destroys his/her own things

21 . Destroys things belonging to his/her family or others

22. Disobedient at home

23. Disobedient at school 24. Doesn't eat well

25. Doesn 't get along with other kids 26. Doesn't seem to feel gui lty after misbehaving

27. Easily jealous

28. Eats or drinks things that are not food-don't include sweets (describe): ___ _

29. Fears certain animals, situations, or places, other than school (describe):

30. Fears going to school

PAGE 3

o o

o

o

o o

o o

o o

o o

o o o o

o o o o

1 1

2 2

44. 45.

Bites fingernails Nervous, highstrung, or tense

2 46. Nervous movements or twitching (describe);

2

2 2 .

2 2

2 2

2 2

2 2 2 2

2 2 2 2

47. Nightmares

48. Not liked by other kids 49. Constipated, doesn't move bowels

50. Too fearful or anxious 51. Feels dizzy

52. Feels too guilty 53. Overeating

54. Overtired 55. Overweight

56. Physical problems without known medical cause:

a. Aches or pains (not stomach or headaches) b. Headaches c. Nausea, feels sick d. Problems with eyes (not if corrected by glasses)

(describe): e. Rashes or other skin problems f. Stomachaches 9r cramps g. Vomiting, throwing up h. Other (describe): __________ _

Please see other side

68

Please Print o = Not True (as far as you know) 1 = Somewhat or Sometimes True 2 = Very True or Often True

o 2 57. Physically attacks peop le 0 2 84. Strange behavior (descri be): _ _ _ __ _ o 2 58. Picks nose, ski n, or other parts of body

o o

o o

o o

o o

0 0

0 0

0 0

0

0

0 0

0

0

0

0

0 0

0

1 1

1 1

1 1

1

1

1 1

1

1

1

1

1 1

1

2 2

2 2

2 2

2 2

2 2

2 2

2 2

2

2

2 2

2

2

2

2

2 2

2

(describe): _ ________ _ _ _

o 2 85. Strange ideas (describe): _ _ ____ _

59. Plays with own sex parts in publ ic 60. Plays with own sex parts too much

61 . Poor school work 62. Poorly coordinated or c lumsy

o

o o

2 86. Stubborn, sullen, or irritable

2 87. Sudden changes in mood or feel ings 2 88. Sul ks a lot

63. 64.

Prefers bei ng with older kids 0 2 us

65. 66.

Prefe rs being wi th younger kids o · e. or obscene language

\1 ki lling sel f ·Iks in s leep (describe): _ __ _ ::~~:~: ~~r~~i~ ac ts " .. - tAd -_ ~ , __

compulsion" ,_. ~.... .~ __ s ~ ~~; 93. T-al-ks-too-m-uc-h --- --

67. Rl ----- 0 1 2 94. Teases a lot 68. SCI

-------- 0 1 2 95. Temper tantrums or hot temper 69. Secr, ___ ."dPslhings to se lf 0 1 2 96. Thinks abou t sex too much 70. Sees th ings that aren't th ere (descri be):

0 1 2 97. Threatens people 0 1 2 98. Thumb-sucking

0 1 2 99. Too concerned with neatness or cleanl ines s 0 1 2 100. Trouble sleep ing (describe):

71. Self-conscious or easi ly embarrassed 72. Sets fires

73. Sexual prob lems (describe): 0 1 2 101. Tru ancy, skips school 0 1 2 102. Underac t ive, slow moving, or lacks energy

0 1 2 103. Unhappy, sad, or depressed 0 1 2 104. Unusually loud

74. Showing of f or clowning 0 1 2 105 .. Uses alcohol or drug s for nonmedical

75. Shy or t imid purposes (describe):

76. Sleeps less than mos t kids 0 1 2 106. Vandalism

77. Sleeps more than most ki ds during day 0 1 2 107. Wets self during th e day

and/or night (describe): 0 1 2 108. Wets the bed

0 1 2 109. Wh ining 78. Smears or plays with bowe l movemen ts

0 1 2 110. Wishes to be of opposi te sex

79. Speech problem (descri be): 0 1 2 111. Wi thdrawn, doesn't get involved with others 0 1 2 11 2. Worr ies

80. Stares blankly 113. Please wri te in any problems your child ha s

81. Steals at home that were not li s ted above:

82. Steals outside the home 0 1 2

83. Stores up things he/she doesn' t need 0 1 2 (describe):

0 1 2

PLEAS E BE SURE YOU HAVE ANSWERED ALL ITEMS. PAGt .4

UNDERLI NE ANY YOU ARE CONCERN ED ABOUT.

APPENDIX B 69

Please Print YOUTH SELF-REPORT FOR AGES 11-18 1 For office use only

10 #

YOUR FIRST MIDDLE LAST FULL PARENTS' USUAL TYPE OF WORK, even If not working now (Please be NAME specilie-Ior example, Buto mechanic, high schoolleacher, homemaker, laborer,

/ETHNIC

lathe opera lor. shoe salesman, army sergeanl.) YOUR SEX YOUR

o Boy 0 AGE GROUP FATHER'S

Girl OR RACE TYPE OF WORK:

TODAY'S DATE YOUR BIRTH DATE MOTHER'S TYPE OF WORK

Mo. Dale Yr. Mo. Oate Yr. --- --- - - --- -- --GRADE IN SCHOOL IF YOU ARE WORKING, PLEASE STATE YOUR

Please fill out this form to reflect your views, even if other

TYPE OF WORK: people might not agree. Feel free to print additional com-

--- ments beside each item and in the spaces provided on NOT ATIENDING SCHOOL 0

I.

II.

Please list the sports you most like to take part in, For example: swimming, baseball, skating, skate boarding, bike riding, fishing, etc.

o None

a. _________________ __

b. ______________ _

pages 2 and 4.

Compared to others of your age, about how much time do you spend in each?

Less Than Average Averap"

o

More Tr

activities, and games, other thr ~n time

Compared to others of your age, how well do you do each one?

,w 1ge

o

Average

0

0

0

Above Average

0

0

0

Compared to others of your age, how well do you do each one?

PI:~se list your favorite hobbies, ~~ /.' of yo:'::

For example: cards, books, r ' S a in each? crafts, etc. (Do not inclur' More

radio or TV.) /,dn Than Below Above

~ None _/AV~ge AV~ge AV~ge AV~ge

b. _______ _ o o o c. ______________ _ o o o

III. Please list any organizations, clubs, teams Compared to others of your age, or groups you belong to. how active are you in each?

0 None Less More Active Average Active

a. 0 0 0

b. 0 0 0

c. 0 0 0

IV, Please list any jobs or chores you have. Compared to others of your For example: paper route, babysitting, age, how well do you making bed, working in store, etc. (Include carry them out? both paid and unpaid jobs and chores.)

Below Above 0 None Average Average Average

a. 0 0 0

b. 0 0 0

c. 0 0 0

., Copyright 1991 1M. Achenbach UNAUTHORIZED REPRODUCTION FORBIDDEN BY LAW U. 01 Vermont, 1 So. Prospect SI., Burlington, VT 05401.

PAGE 1

o o

Average Average

0 0

0 0

0 0

4-95 Edition

V. 1. About how many close friends do you have? (Do not include brothers & sisters)

Please Print

o None

70

o o 20r3 o 4 or more

2. About how many times a week do you do things with any friends outside of re!l!:!!ar school hours? (Do not Include brothers & sisters) 0 less than 1 U 1 or 2 0 3 or more

VI. Compared to others of your age, how well do you:

Worse About Average ~r

~ r ~ a. Get along with your brothers & sisters?

b. Get along with other kids?

c. Get along with your parents?

d. Do things by yourself?

VII.

S /' '0; "'ow ~""g. Check a box for each

a.

b. HI --" Studies 0 ·0

c. AriU, ... c:lic or Math 0 0

d. Science 0 0 Other academic sub· jects- for example: e. 0 0 computer courses, foreign language, business. Do not in-

f. 0 0 clude gym, shop, driver's ed., etc. g. 0 0

Do you have any illness, disability, or handicap? 0 No 0 Yes-please describe:

Please describe any concerns or problems you have about school:

Please describe any other concerns you have:

Please describe the best things about yourself:

PAG E 2

Average

o o o o o o o

o I have no brothers or sisters

\.

Above Average

o o o o o o o

71

Below is a list of items that describe kids. For each item that describes you riow or within the past 6 months, please circle the 2 if the item is very true or often true of you. Circle the 1 if the item is somewhat or sometimes true of you. II the item is not true of you, circle the O.

Please Print 0 = Not True 1 = Somewhat or Sometimes True 2 Very True or Often True

o o

o o o o o o

o

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

1. I act too young for my age o 2. I have an allergy (describe): ___ __ _

3. I argue a lot 0

4. I have asthma 0

5. I act like the opposite sex 0

6. I like animals 0

7. I brag 0

8. I have trouble concentrating 0

or paying attention

9. I can't get my mind off certain thoughts

2

2

2

2

2

2

2

40. I hear sounds or voices that other people think aren't there (describe):

41. I act without stopping to think

42. I would rather be alone than with others

43. I lie or cheat

44. I bite my fingernails

45. I am nervous or tense

46. p.- , my body tw itch or rvous movements (describe):

.,dres

10. I have trf" " 11 . 1'-

12.

13.

14.

15. 5 ~

J./ l 'can do certain things better ~. than most kids

.~ 2 50. I am too fearful or anxious

<J' 1 2 51. I feel dizzy . ___ ~- 0 1 2 52. I feel too guilty

CI.

am .

16. am I

17. daydr\

18. deliberately try to hurt or kill myself

19. try to get a lot of attention

20. destroy my own things

21. destroy things belonging to others

22. disobey my parents

23. disobey at school

24. don't eat as well as I should

25. don't get along with other kids

26. don't fee l guilty after doing something I shouldn't

27. I am jealous of others

28. I am willing to help others when they need help

29. I am afraid of certain animals, situations, . or places, other than school (describe):

30. I am afraid of going to school

31. I am afraid I might think or do something bad

32. I feel that I have to be perfect

33. I feel that no one loves me

34. I feel that others are out to get me

35. I feel worth less or inferior

36. I acc identally get hurt a lot

37. I get in many fights

38. I get teased a lot

39. I hang around with kids who get in trouble

PAGE 3

o 1 2 53. I eat too much

0 2 54. I feel overtired

0 2 55. I am overvveight

56. Physical problems without known medical cause:

0 2 a. Aches or pains (not stomach or headaches)

0 2 b. Headaches

0 2 c. Nausea, feel sick

0 2 d. Problems with eyes (not if corrected by glasses) (describe):

0 2 e. Rashes or other skin problems

0 2 f. Stomachaches or cramps

0 2 g. Vomiting, throwing up

0 2 h. Other (describe):

0 2 57. I physically attack people

0 2 58. I pick my skin or other parts of my body (describe): ____ _____ __ _

0 2 59. I can be pretty friendly

0 2 60. I like to try new things

0 2 61. My school work is poor

0 2 62. I am poorly coordinated or clumsy

0 2 63. I would rather be with older kids than with kids my own age

Please see other side

o

o o

o o o o

o o o o o o o

0

0

0

0

0

0

0

2

2

2

2 2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

o = Not True 1 = Somewhat or Sometimes True

64. I would rather be with younger kids than with kids my own age

65. I refuse to talk

66. I repeat certain acts over and over (describe) :

o 2

72 2 =. Very True or Olten True

85. I have thoughts that other people would think are strange (describe): _____ _

\ born \

67. I run away from home l or feelings change suddenly

68. I scream a lot \ . h 69. . " ~~t other people

70. I see thin"~" "

t~~ ' ~ ,.,ear or use dirty language

S 91. I think about killing myself

- 1 2 92. I like to make others laugh

.-- 0 2 93. I talk too much

71 . I G -' easily elZ1barrassed

72. 1st

73. I can work well with my hands

74. I show off or clown

75. I am shy

76. I sleep less than most kids

77. I sleep more than most kids during day andlor night (describe):

78. I have a good imagination

79. I have a speech problem (describe): __

80. I stand up for my rights

81 . I steal al home

82. I steal from places other than home

83. I store up things I don't need (describe):

84. I do things other people think are strange (describe):

a 2 94. I tease others a lot

o o o o o

o

a 0

0

0

0

0

0 ,

a 0

0

0

a

2 95. I have a hot temper

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

96. I think about sex too much

97. I threaten to hurt people

98. I like to help others

99. I am too concerned about being neat or clean

100. I have trouble sleeping (describe): __ _

101 . I cut classes or skip school

102. I don't have much energy

103. I am unhappy, sad, or depressed

104. I am louder than other kids

105. I use alcohol or drugs for nonmedical purposes (describe):

106. I try to be fair to others

107. I enjoy a good joke

108. I like to take life easy

109. I try to help other people when I can

110, I wish I were of the opposite sex

111, I keep from getting involved with others

112. I worry a lot

Please write down anything else that describes your feelings, behavior, or interests

PAGE <4 PLEASE BE SURE YOU HAVE ANSWERED ALL ITEMS

UNIVERSITY OF MARYLAND AT COLLEGE PARK

Ms. Leigh Ann Kramer 2033 N . 6th St. Sheboygan, WI 53081

Dear Ms. Kramer:

OEP ARTMENT OF SOCIOLOGY

July 16, 1997

Thank you for your interest in the Self-Esteem scale of Dr. Morris' Rosenberg, regrettably, Dr. Rosenberg passed away five years ago. However, Dr. Florence Rosenberg, Manny's widow, has given permission to use the Self-Esteem Scale for educational and professional research. Please be sure to give the credit due to Dr. Morris Rosenberg when you

. use it. We would also appreciate receiving copies of any published works resulting from this

research.

Enclosed, please flnd a copy of the scale, along with brief instructions on nonning and scoring it. A fuller description of the scale may be found in the Appendix of Society and the Adolescent Self-Image . . You may wish to contact Dr. Rosenberg's co-autho!"3 for more information relating to his work.

There is no charge associated with the use of this scale in your professional research.

Enclosures

Sincerely,

W<L~t-_~~ Wanda E. Towles Administrative Aide II E-mail: wtowles@bssl.urnd.edu

lttlART-SOC10LOCYBUlLDINC • COLllCEPARK.MARYlANDl0741·131S I OOI)4oO.S-6J9'2 • FAX:(3Ql)314-6892

ROSENBERG SELF-ESTEEM SCALE

BELOW IS A LIST OF STATEMENTS DEALING WITH YOUR GENERAL FEELINGS ABOUT YOURSELF. IF YOU STRONGLY AGREE, CIRCLE SA. IF YOU MiliEE WITH THE STATEMENT, CIRCLE A. IF YOU DISAGREE, CIRCLE l!. IF YOU STRONGLY DISAGREE, CIRCLE s.D..

STRONGLY STRONGLY

AGREE AGREE DISAGREE DISAGREE

On the whole, I am satisfied with myself. SA A D SD

2 At times I think I am no good at all. SA A D SD

3 I feel that I have a number of good qualities. SA A 0 SD

4 I am able to do things as well as most other SA A D SD people.

5 I feel I do not have much to be proud of. SA A D SD

6 I certainly feel useless at times. SA A 0 SD

7 I feel that I'm a person of worth, at least SA A D SD on an equal plane with others.

8 I wish I could have more respect for myself. SA A D SD

9 All in all, I am inclined to feel that I am a SA A D SD failure.

10 I take a positive attitude toward myself." SA A D SD

?d ""d

~ ...... ~

n

-...J w

74 APPENDIX D

~p CEREBRAL PALSY OF SOUTHEASTERN WISCONSIN. INC.

Stipend Receipt Fonn

I, --------_______ --J' have received a cash payment of $25 PRlNTNAME

for my participation in Leigh Ann Kramer's research project measuring the self-esteem

and social competence of adolescents with cerebral palsy. My signature on this form and

receipt of this stipend in no way alters my rights as stated in the Informed Consent Form.

Signature of parent/guardian Date

230 West Wells Street. Suite 502 • Milwaukee. Wisconsin 53203

. Telephone (414) 272-4500 • Fax (414) 272·7047 • TTY (414) 272·1077

f

APPENDIX E

bWl» CEREBRAL PALSY OF SOUTHEASTER N WIS CONSIN, INC.

Dear School and Community Professionals:

Leigh Ann Kramer ofVnited Cerebral Palsy of Southeastern Wisconsin is conducting a statewide research project on the self-esteem and social adjustment of adolescents who have cerebral palsy. We need your help in locating qualified families for participation.

We need families who meet the following criteria:

1) reside any where in Wisconsin 2) have a teenager who will be 12-18 years old any time between

June and December 1997 3) the youth must have a diagnosis of cerebral palsy

WITHOUT a diagnosis of cognitive disabilities

This study will require that the parent/primary care giver AND the youth complete a series of survey questionnaires. Assistance will be provided as needed. The entire process will take less than one hour. Thanks to funding from the Wisconsin Council on Developmental Disabilities (WCDD) for this project, each family will be able to receive

I

75

$25 in return for their time and input. All information gathered will be coded numerically (no names) so families can be assured of confidentiality.

This research is the subject of Leigh Ann's doctoral dissertation and will take place throughout the last 6 months of 1997. Results will be available to all of the VCP affiliates and the WCDD for the purpose of planning and expanding community supports for families of adolescents with physical disabilities. Participants may request final results as well.

Please share this notice or the enclosed family letters with any qualifying families. They may contact Leigh Ann directly:

VCP Office in Milwaukee (414) 272-4501 ext. 274 or toll free 1-888-4VCP-SEW (1-888-482-7739) Home (Sheboygan) (920)-451-6901 e-mail: bkaiser@execpc.com

Thank you so much for helping with this effort!

230 West Wells Street, Suite 502 • Milwaukee, Wisconsin 53203 Telephone (414) 272-4500 • Fax (414) 272-7047 • TIY(4 14) 272:1077

1·888-482·7739 • (l ·888-4 UC.PSEW)

APPENDIX F

bWp CEREBRAL PALSY OF SOUTHEASTERN WISCONSIN, INC.

Dear Family:

I am conducting a statewide research project on the self-esteem and social adjustment of adolescents who have cerebral palsy. I have asked schools and agencies to pass this letter on to you because you live in Wisconsin and have a 12-18 year old son or daughter who has a diagnosis of cerebral palsy (without a diagnosis of cognitive disabilities).

The study consists of meeting with me in your home or any place you would prefer and completing paper and pencil questionnaires. YOu, as the parent or primary care giver will complete some of the surveys and your son or daughter will complete others. Assistance will b~ provided whenever needed. The process should take approximately one hour and you will be able to receive $25 in return for your time and input. A)1 information will be coded by number (no names) so you can be assured of complete privacy and confidentiality. The study will take place throughout the last half of 1997.

This research is the subject of my doctoral dissertation and is being done in partnership with United Cerebral Palsy of Southeastern Wisconsin, where I have worked for five years, and with the Wisconsin Council on Developmental Disabilities. Complete study results will be available to these agencies for the purpose of planning and expanding community supports for families of adolescents with physical disabilities. As a participant, you can also receive the final study results.

If you are interested in participating or if you have questions, feel free to contact me:

UCP Office in Milwaukee (414) 272-4501 ext. 274 or toll free 1-888-4UCP-SEW . (1-888-482-7739) Home (Sheboygan) (920) 451-6901 e-mail: bkaiser@execpc.com

Please pass this along to other qualified families, too.

Thank you so much for your consideration!

Leigh Ann Kramer Family Resource Coordinator Ph.D. Candidate, Marquette University

230 West Wells Street, Suite 502 • Milwau kee, Wisconsin 53203 Tel<!p hone (4 14) 272-4500 • Fax (41 4) 272-7047 • TTY(414) 272-10 77

1·888-482·7739 • (l -888-4UCPSEW)

76

77

APPENDIX G

ID# ____ _

Demographic and Child Health fnfonnation Survey

THIS INFORtVlATION IS STRICTLY CONFIDENTIAL

I) Primary Care giver: Mother Father Other: ------- 2) Age: Rd3tiunship (0 child

3) Education Level: Yrs of High School completed: __ Yrs of College completed: __

4) Secondary Care giver: Mother Father Other: ___ ---:-__ _ 5) Age: R.::13tionship (0 child

6) Education Level: Yrs of High School completed: __ Yrs ofColJege completed: __

7) Are child's birth parents married to each other? YES NO

8) If parents are divorced or separated, how old was child when separation occurred? __

9) Age of child participating in study __ _ 10) Age of other siblings _______ _

II ) Total number of children and adults living in the household is __ _

12) Please check eX) the range that represents total armual household income:

_ a) Under $10,299 _ b) $10,300-15,599 _c) $15,600-20,839 _ d) $20,840-26,079

_ e) $26,080-34,685 _ f) $34,686-40,243 _ g) $40,244-48,248 _ h) $48,249-59,999

_ i) $60,000-74,999 _j) $75,000-94,999 _k) $95,000-119,999 _I) Over 120,000

13) Family lives in the _Town. _ City, _ Village of ___________ ,

14) which is in the county of __________ _

15) Do any of the brothers or sisters also have a disability? YES NO If YES, please describe:

n

16) Do you consider your child's disability to be __ mild. __ moderate. or _ severe?

17) Has s/he seen a doctor in the last six months? YES NO

rfYES, approximately how many times __ _

18) Has s/he been hospitalized in the last six monthsry YES NO

If YES, how many times and for what reason?

19) Is your child's speech __ a) entirely nonnal __ b) not quite distinct or clear but easily understandable __ c) understandable with some difficulty __ d) understandable with considerable difficulty __ e) not understandable/no verbal speech

20) Does slhe have difficulty with hearing? YES NO

rfYES, please describe:

21) In the last six months, has slhe had any severe headaches? YES NO

a) If YES, approximately how many and how often? \

b) If YES, how many days has slhe stayed home (missed school or ac~ivity)

. due to headaches?

22) In the last six months, has slhe had any instances of asthma or wheezing? YES NO

23) Does your child have diabetes? YES NO

24) Has your child ever had a seizure in his/her lifetime? YES NO

a) rfYES. when was the last seizure?

b) How often do seizures occur?

25) Does slhe have weakness or paralysis in hislher anns or legs? YES NO

If YES, please describe:

78

26)Does s/he need any special diet or are there any foods slhe is not allowed to eat? YES NO

If YES. describe:

If YES. who advised the diet or made the specifications?

27) Are there things which slhe is not allowed to do because of his/her health? YES NO

If YES. please describe:

If YES. who advised that slhe could not do them (family doctor. hospital. etc.)?

28) Describe your child's energy level: __ a) bounding with energy __ b) just nonnal amount of energy __ c) tired, sluggish or lacking energy __ d) very tired, sluggish or lacking energy

29) Does your child have any medical or health problems at the present? YES NO

If YES, please describe:

30) Are there any other care needs for your child other than those already mentioned? If so. please describe:

\

31) Is it difficult to take your child into the community (shopping, visiting, etc.)? YES NO

If YES. please describe why (transportation, behavior, communication, etc.) :

32) Is it difficult for you to go out without your child? YES NO

If YES, please describe why:

33) Please list any assistive or adaptive devices used (wheelchair. braces. speech synthesizer, computerized equipment, etc.)

34) Does your child have specialized transportation needs? YES NO

If YES. please describe:

79

80

35) Do you have access to public/private specialized transportation in your community') YES NO

36) rs there any regular public transportation (bus, cab) in your community') YES NO

37) How often do you vacation as a whole family? (Weekends or longer away from home) __ a) several times a year __ b) yearly __ c) other (list) : ________ _

38) How often do you vacation separate from your children? __ a) several times a year __ b) yearly __ c) other (list): ________ _

rf you do not vacation or get away at all. please describe why nor:

39) As a parent of a child with cerebral palsy, what would you say your greatest need is?

40) Do you talk about cerebral palsy with or around your child? YES NO

rfYES, please describe how:

\

41) How do you think your child feels about having a disability?

42) What do you think s/he wants to pursue after graduation?

43) Which is most true? __ a) Most of my child's friends also have a disability. __ b) Most of my child's friends do not have a disability.

44) Was your child part of a Birth to Three or early intervention program before attending school? YES NO

rf YES, for how long and what services were received? __ PT, OT, Speech, Education

45) Do you feel that slhe is having the right kind of schooling? YES NO

If NO, what sOrt of schooling do you think slhe ought to have?

46) At what age did your child begin attending school? __ (If you home school. please tell when you began and for how long and answer only the questions that you feel apply to your situation.)

47) Which of the follov.-ing best describes your child's elementary school program? __ a) all day special setting (classes with other students with disabilities) __ b) half day special setting, half day regular setting __ c) most day regular setting with 1-2 hours of special education or therapy sessions __ d) all day regular setting __ e) other - please describe:

48) Which of the following best describes your child's middleJhigh school program? __ a) all day special setting (classes with other students with disabilities) __ b) half day special setting, half day regular setting __ c) most day regular setting with 1-2 hours of special education or therapy sessions __ d) all day regular setting __ e) other - please describe:

81

49) If your child is involved in extra-curricular or community activities, please tell how long slhe has been.. involved in the activity and list the type of activity (Y classes, Special Olympics, i;lubs, etc.):

__ a) Only within the past year _____________ ........:. _____ _ __ b) For between 1-3 years _______________________ _ __ c) For ?etween 3-5 years _______________________ _ __ d) For more than five years ______________________ _

50) What is the combined average number of hours per week spent on these types of activities? (We know some activities are seasonal - JUSt give us your best guess of average time spent.)

__ a) Less than one hour each week __ b) 1:'3 hours each week __ c) 3-5 hours each week __ d) 5-7 hours each week __ e) 7-13 hours each week __ f) over 14 hours each week

THANK YOU!

82

APPENDIX H

ID# ___ _

YOUTH QUESTIONNAIRE

Please answer these questions briefly with the first thoughts that come to mind. Anything you write will be kept confidential. It will not be shared with anyone else.

I) What do you want to pursue after graduation?

2) What would you do with 3 wishes?

3) What would you do with a million dollars?

4) Which is most true? __ a) Most of my friends have a disability.

__ b) Most of my friends do not have a disability.

5) Do you consider your disability to be __ mild. __ moderate. or __ severe?

6) How do you feel about having a disability?

APPENDIX I

Marquette University Agreement of Consent for Research Subjects

I agree to participate in Leigh Ann Kramer's research study pertaining to the self-esteem and social competence of teenagers who have cerebral palsy. I understand that this involves myself AND my son or daughter's completion of several written assessments and information questionnaires and that no identifying information will be on the forms. All reports will be numerically coded for confidentiality. My responses will not be shared directly with anyone including my son/daughter, nor will I have access to hislher responses. No treatment will be imposed on my family.

When I sign this statement, I am giving my informed consent to the following basic considerations:

1. I understand clearly the procedures to be done, including any that might be experimental. 2. I understand that aside from the hour involved in completing forms, no other discomforts

and/or risks should be associated with this research project. 3. I understand clearly any benefits anticipated from this research project. 4. I understand that provisions have been made to protect my privacy and to maintain the

confidentiality of data acquired through this research project. 5. The project director has offered to answer my questions about the procedures. She can also

be contacted for further information about this research project at (414) 272-4500. 6. I understand clearly that I may withdraw at any time from this research project without penalty

or loss of benefits to which I am otherwise entitled. 7. I am not involved in any agreement for this project, whether written or oral, which includes

language that clears the institution or its representatives from alleged fault or guilt. I have not waived or released the institution or its representatives from liability for negligence, if any, which may arise in the conduct of the research project.

I understand that if I am injured as a result of biomedical and behavioral research procedures, medical treatment is available for such injury, in an amount not to exceed $500. I also understand that no monetary compensation is available for wages lost because of such injury. Further information can be obtained by contacting the Director of Research and Sponsored Programs, Marquette University, (414)288-7200.

I, the person signing below, understand the above explanations. On this basis, I consent to participate voluntarily in the project measuring the self-esteem and social competence of adolescents with cerebral palsy.

Date ---------------------------------------- --------------------------(signature of adolescent participant)

Date ~------~----~--~--~--------~---- -------------------------(signature of parenti guardian giving consent for youth and self to participate)

________________________________________ Drue ________________________ __

(signature of witness)

(signature of investigator)

83

84

APPENDIX J

10,--------------------------------------------------------.

8 4----------+~%r--------------_.,==._+@J~_==r--------------~

Under 10,30015,60020,840 26,080 34,68640,24448,24960,000 75,000 95,000 Over 10,299 To To To To To To To To To To 120,000

15,59920,83926,069 34,68540,243 48,24859,99974,99994,999 119,000

N=60

Figure J-1. Range ofFamily Income.

D

ST. CROIX

PIERCE

APPENDIX K

WASHBURN SAwYER

ASHL..ANO

PRICE

OHEIOA

.... RAOH RUSK

UNCOlH

• TAYLOR

CHIPPEWA

DUN.

1-----,.-' MARATHON

CLARK

• EAUCLAIREe

•• TAE ....

EALEAU JACKSON

'AUK

RtcHLAHD

IOWA

LAFAYETTE GREEN ROCK

•

Figure K-1 . Geographic Distribution of Study Participants.

The sixty study participants were obtained from 17 of Wisconsin's 72 counties.

Figures K -1 shows the geographic distribution of this sample throughout the state. The

three most populated counties in the state are shaded and contained the highest number of

subjects (Milwaukee 11 = 20, Dane 11 = 4 and Waukesha 11 = 11).

85

While social and recreational opportunities vary greatly in communities that are

urban vs. communities that are rural, Achenbach found that "sparsely populated areas per

se are not likely to reduce social competence scores to the clinical range, as children in

rural areas do not generally obtain lower competence scores than children in urban areas"

(Achenbach, 1991 a, page 131). The current study's findings were consistent with

Achenbach's findings as there was no difference in test scores based on the urban,

suburban or rural settings in which the youth lived. A one way analysis of variance

determined that the single notable difference was that Total severity of disability scores

were significantly higher in rural areas as compared to suburban areas (F (2,57) = 5.73,

P < .01) indicating that significantly more of the youth with severe disabilities resided in

rural areas (total study n = 13), followed by urban areas (n = 23) and finally suburban

areas (n = 24).

86

APPENDIX L

Disability Rating Results

F our separate disability severity ratings were combined to determine the Total

disability severity score utilized in this study. The scores were summed and converted into

standardized z scores where the mean score was 0.00, the standard deviation 3.24, the

minimum -4.81 and the maximum 9.51 . While there was a significant level of skewness

(.70, P < . ° 1), the distribution of scores was similar to the normal distribution of scores

within the general population, with more severe scores being the less prevalent.

It is .worthwhile to note that taken separately, the Youths' perception of their

disability severity measure was shown to be significantly different from other measures.

An ANOVA comparing the youth ratings to the Total disability severity score found

significant difference (F (2,57) = 5.40, p < .001).

A Chi-Square analysis compared the youths' ratings of their disability from a three

point scale of mild (1), moderate (2) , severe (3) to the care givers' ratings based on the

same three point scale. A significant Chi-Square (X2 26.49, df= 4,p < .001) suggests that

the ratio of youth ratings with care giver ratings was not uniform across disability severity.

Agreement between the raters would produce diagonal cells with comparable n's. A

second Chi-Square analysis compared the youths' ratings of their disability from the three

point scale to the interviewer's ratings based on the same scale. A significant Chi-Square

(X2 23.37, df= 4, P < .001) also suggests that the ratio of youth ratings with interviewer' s

ratings was not uniform across disability severity. In all cases, the youth appeared to

underestimate severity level. Figures L-1 and L-2 show the results of the youth ratings

compared to the care giver and interviewer ratings respectively.

87

0.()

= .-.... ~

~ ~ .... .-J. aJ ~ aJ

rJJ. ..= .... ::s 0 ~

Care Giver Severity Rating

MILD MOD SEVERE Q .....:l -~ 20 21 ...,

oJ

Q 0 ~ 1 9 1

~ u:l > 1 4 u:l C/.l

21 31 8

5

Figure L-l . Youth Disability Rating by Care Giver Disability Rating

0.()

= .-.... ~

~ ~ .... .-J. aJ ~ aJ

rJJ. ..= .... ::s 0 ~

Interviewer Severity Rating

MILD MOD SEVERE Q .....:l

~ 21 15 8

Q 0 ~ 1 8 2

~ 5 u:l C/.l

22 23 15

Figure L-2. Youth Disability Rating by Interviewer Rating.

5

88

•

APPENDIX M

Ancillary Findings

Analyses were conducted between each of the variables in Table M-l and the

following demographic variables: race, siblings with disabilities, birth order, parents'

marital status, age at separation, parents' age and education, type of school setting and

presence of learning and other disabilities.

Table M-l

Descriptive Statistics of the Main Study Variables

Variable M S.D. Minimum Maximum

CBCL Problems 34.02 20.85 2.00 99.00

YSR Problems 39.68 22.34 7.00 99.00

CBCL Activities 3.78 1.82 .00 7.00

YSR Activities 3.58 1.63 .00 6.00

CBCL Social 4.85 2.13 1.00 9.50

YSR Social 6.04 2.05 1.50 9.50

CBCL School 3.78 1.51 1.00 6.00

CBCL Internal 10.72 8.12 .00 40.00

YSRInternal 12.72 8.66 .00 38.00

CBCL External 8.67 7.02 .00 30.00

YSRExternal 10.12 7.48 .00 43 .00

Self-esteem 32.35 5.29 17.00 40.00

Note: N= 60

89

T -tests looking at race differences determined that the non-white sample (n = 9,

M = 55.67,.sJ2 = 21.00) scored significantly higher than the white sample (n = 51,

M = 36.86, SJ2. = 24.15, P < .05) on the YSR Problem Scores. There was, however,

no significant difference between these groups on Self-esteem scores (non-white M =

31. 78, SJ2. = 5.36; white M = 32.45,....s...J:l. = 5.32, p = .73) or the other variables tested.

T-tests indicated that youth who had siblings with disabilities (n = 13) did not

differ from those who did not (n = 47) on any of the variables in Table M-1. Several

ANOV AS were conducted between those variables and five birth order groups (first born,

middle, last born, twin, only child). The only area of interest was a one way analysis of

variance between self-esteem and birth order revealing a significant difference between

groups (F (4,55) = 2.70,p < .05). A Tukey post hoc analysis showed that twins

(whether or not their twin also had CP) had significantly higher self-esteem than the first

born youth. Table M-2 shows the self-esteem scores of all five birth order groups.

Table M-2

Self-esteem Scores by Birth Order Groups

Birth Order n . M S.D. Minimum Maximum

First born 16 29.69 6.22 17 39

Middle 12 32.58 5.74 23 40

Last born 11 32.36 4.99 24 38

Twin 8 36.75 2.19 33 40

Only Child 13 32.69 3.57 28 39

90

A series oft-tests indicated that marital status of parents was related to a number

of variables. As shown in Table M-3, youth whose birth or adoptive parents were no

longer married to each other scored significantly higher in Problem areas, particularly

external measures of aggression and delinquency, and significantly lower in School

Competence.

Table M-3

Birth! Adoptive Parents Marital Status by Problem and Competence Scores

CBCL Problems M SJ2. t CBCL External M S.D. t

YSR External M SJ2. t CBCL School M SJ2. t

NOTE : df = 58 * p<.05; ** P < .01

Married Not Married n = 32 n = 28

28.56 18.22

6.41 5.24

8.31 6.22

4.16 1.41

40.25 22.22 -2.24*

11.25 7.94

-2.82**

12.18 8.34

-2.05*

3.36 1.55 2.10*

The age of the youth at separation was tested on all variables and was found to

correlate negatively only with self-esteem (r = -.38 ,p < .05). The older the youth was at

the time of separation, the lower the self-esteem score.

91

92

The age of the mothers ranged from 29 to 56 with a mean ~ge of 42.8. The age of

the fathers ranged from 29 to 58 with a mean age of 45.5 . Parents' age did not relate to

any of the variables in Table M-l.

Mothers' and fathers' education level was examined in relation to all of the

variables in Table M-l. The only significant finding was a negative correlation between

fathers' education level and CBCL Social Competence. As the fathers' education level

increased, the CBCL Social Competence Scores (number offriends, amount of contact,

getting along with family members, etc.) decreased (r = -.33,p < .05). It should be noted

that data was missing for one mother on each of the age and education scales and for 14

of the fathers on the age scale and 11 of the fathers on the education scale.

Care givers were asked to describe their youth's school setting as either 1) "all day

special setting (classes with other students with disabilities)" (n = 7), 2) "half day special

setting, half day regular setting" (n = 4), 3) "most day regular setting with 1-2 hours of

special education or therapy session" (n = 26), or 4) "all day regular setting" (n = 23). A

series of ANOV AS showed significant differences between the type of school setting and

CBCL Problem Scores, CBCL Externalizing Scores and CBCL School Competence

Scores. The youth in all day special settings had significantly greater CBCL Problem

Scores eM = 53.29) than the youth in all day regular settings eM = 28.74, P < .05). The

youth in all day special settings had significantly greater Externalizing Scores (Aggressive/

Delinquent) (M = 15.0) than the youth in the most day regular settings eM = 7.30,

p < .05). As a comparison, the mean score for youth in all day regular settings was 7.78

and for youth in hal£'half day settings was 11.5. The youth in all day regular settings had

significantly higher CBCL School Competence Scores than all other groups (p < .001). . .

93

Table M-4 displays significant findings when the sample distribution was divided

into groups based on whether or not the youth had a diagnosed learning disability (LD)

and whether or not the youth had some other (OTHER) disability (hearing or vision

impairment, seizure disorder, or other medical condition) in addition to the cerebral palsy.

Table M-4

Learning and Other Disabilities by Problem and Competence Scores

LD NoLD OTHER No OTHER n=23 n= 37 n= 13 n=47

CBCL Problems M 45.43 26.91 47.69 30.23 SJ2. 21.26 17.36 21.97 19.09 t 3.68*** 2.83** CBCL External M 11.22 7.08 13 .38 7.36 SJ2. 9.56 4.25 9.96 5.40 t 2.30* 2.91 ** CBCL I.nternal M 14.17 8.57 13 .77 9.87 SJ2. 7.77 7.67 7.50 8.16 t 2.74** 1.55 CBCL Social M 4.22 5.24 3.38 5.26 S.D. 1.94 2.17 1.30 2.14 t -1.85 -2.98** CBCL School M 2.63 4.50 2.96 4.01 S.D. 1.27 1.18 1.23 1.52 t -5 .80*** -2.29*

NOTE: df= 58 * p< .05; ** P < .01; *** P < .001

94

APPENDIX N

Table N-l

Disability Severity Ratings

n % Raw Score z Score Variable 1 Care Giver Rating 21 35 mild 1 -1.18

31 52 moderate 2 .33 8 13 severe 3 1.83

Variable 2 Youth Rating 44 73 mild 1 -.55 11 18 moderate 2 1.03 5 8 severe 3 2.61

Variable 3 Interviewer Rating 22 37 mild 1 -1.13 23 38 moderate 2 .15 15 25 severe 3 1.43

Variable 4 Severity Index 2 3.3 mildest 1 -1.95 2 3.3 2 -1.55 4 6.7 3 -1.15 9 15.0 4 -.75

12 20.0 5 -.35 7 11.7 6 .05

11 18.3 7 .45 8 13 .3 8 .85 2 3.3 9 1.25 1 1.7 11 2.05 1 1.7 most 12 2.45 1 1.7 severe 15 3.65

Table N-2

Total Disability Severity Score (after above individual z scores are summed for each subject)

N M S.D. Minimum Maximum Range

Disability 60 0.00 3.24 -4.81 9.51 14.32

95

APPENDIX 0

bW~ CEREBRAL PALSY OF SOUTHEASTERN WISCONSIN, INC.

This research project on the self-esteem and social competence of adolescents with cerebral palsy lends itself well to a long-term follow-up study. There may come a time when this study sample could be the focus of research pertaining to adjustment into adult life.

If you are interested in a possible follow-up contact, please provide your name, address and phone number. We would also request your 1997 test code number so that a comparison can be made between these test scores and any subsequent measures. This will be the only place that both your name and test code are linked. This sheet will be kept entirely separate from all other documents and will not be used to identify you for any other reason. Your name will not be given out to anyone else as having been a participant in this study. You are under no obligation to provide this information and will have the opportunity to decline further participation if approached at a later date.

Thank you!

Care Giver's Name: ------------------------------------------------------Youth's Name: ----------------------------------------------------------Address: ______________________________________ -,-___

Phone: (~ __ -.J _____________ _

1997 Test Code Number: __________ __

230 West Wells Street, Suite 502 • Milwaukee, Wisconsin 53203

.· Telephone (414) 272-4500 • Fax (414) 272-7047 • TTY (414) ~72-1077