llllll! llllllllllflllllfllfllllllll

3 1293 011

 

LIBRARY
Michigan State
University

 

 

 

This is to certify that the
thesis entitled
Attitude, Circumstantial Conditions,
and the Understanding of Terminology
Possessed by Parents of Cleft Children
presented by

Kathryn Ann Weller

has been accepted towards fulfillment
of the requirements for

JesteL's—degree in Audiology and Speech
Sciences

Mtge/Ag

Major professor

Date Ma! 15! 1987

0-7639 MS U is an Affirmative Action/Equal Opportunity Institution

 

 

MSU RETURNING MATERIALS:
Place in book drop to
LIBRARIES remove this checkout from
.—:_. your record. FINES will

be charged if book is
returned after the date
stamped below.

 

 

 

 

 

05-3} fl £2333

 

 

 

 

 

ATTITUDES, CIRCUMSTANTIAL CONDITIONS, AND THE
UNDERSTANDING OF TERMINOLOGY POSSESSED

BY PARENTS OF CLEFT CHILDREN

BY
Kathryn Ann Weller-Runyan

A THESIS

Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

MASTER OF ARTS

Department of Audiology and Speech Sciences

May 1987

ABSTRACT
ATTITUDES, CIRCUMSTANTIAL CONDITIONS, AND THE

UNDERSTANDING OF TERMINOLOGY POSSESSED
BY PARENTS OF CLEFT CHILDREN

BY
Kathryn Ann Weller-Runyan

Thirty-one respondents (mothers, fathers, or both)
from a hospital clinic and private clinic completed
questionnaires designed to elicit information about
attitudes, circumstantial conditions, and knowledge of
terminology concerning the birth and habilitation pro-
cedures of their cleft child. Responses indicated an
overall high positive parental attitude. The less
favorable attitudes involved feelings of guilt and hos-
tility.

The circumstantial conditions scale was designed
to assess the personal and environmental factors that
impact the family affected by a cleft. Parents indi-
cated favorable circumstantial conditions. A positive
correlation was found to exist between the scores on
the attitude scale and the circumstantial conditions

scale.

Kathryn Ann Weller-Runyan

Parents were asked to define 1o terms relating to
a child's cleft and treatment procedures. Terms refer-
ring to professionals in the habilitative process were
understood better than terms which referred to surgical
procedures. Overall, the parents did not have a good

understanding of the terminology.

ACKNOWLEDGMENTS

I would like to express my sincere appreciation
and thanks to Dr. Milton J. Hill, Ruth Greenbaum, The
Mid-Michigan Oral Cleft and Facial Malformation Consul-
tation Clinic, and Dr. Donald Kapetansky and his office
staff for their invaluable assistance in the prepara-
tion and completion of this study.

I would also like to express my heartfelt appreci—
ation to David Runyan and his family for their love and
encouragement over the extent of my graduate studies
and throughout the completion of this thesis. Finally,
my deepest gratitude to my parents and family for their

continued support, understanding, and confidence in me.

ii

TABLE OF CONTENTS

 

PAGE
LIST OF TABLES. . . . . . . . . . . . iv
QHABTEB
I The Problem and Review of the
Literature. . . . . . . . . 1
Introduction . . . . . . . . 1
Statement of the Problem . . . . 11
II Methodology . . . . . . . . . 15
Development of the Questionnaire . 15
Selection of Subjects . . . . . 25
III Results 0 O O O O O O O O O O 28
Results of the Attitude Scale . . 30
Results of the Circumstantial
Conditions Scale. . . . . . 32
Terminology . . . . . . . . 35
IV Discussion, Summary, and Conclusions . 38
Discussion. . . . . . . . . 38
summary. O O O O O O O O O 43
Conclusions, Comments, & Future
Research . . . . . . . . 45
Appendix C O O O O O O O O O O O O O 49
List of References. . . . . . . . . . . 52

iii

TABLE

LIST OF TABLES

PAGE
General Data Concerning Parents and
Children with Clefts . . . . . 29
Scores on the Attitude Scale. . . . 31
Scores on the Circumstantial Conditions
Scale . . . . . . . . . . 33
Distribution of Terminology Scores. . 36

iv

Chapter 1

The groblem and Review of the Literature
Introduction

The parents of a handicapped child face problems
which are often difficult to surmount. Every parent
wants a "normal" child. Giving birth to a child who
deviates from normality is a frustration. Many parents
have difficulty raising a handicapped child because of
society's attitude toward the handicapped and their
parents. These factors may impede the parent's capac-
ity to develop a strong affectionate relationship with
their child. Raising a handicapped child requires wis-
dom, skill, and parental security.

The birth of a handicapped child sets the parents
off from the others. From the first day, the mother
feels herself cut off from the other mothers on the
obstetrical ward (Featherstone, 1980). She is not able
to share in the happy conversation about birth weights,
labor, and nursing without a sense of sadness. While
some parents have warm protective feelings for the
handicapped, others feel threatened, fearful, uncom-

fortable, or even repelled in their presence

1

(Featherstone, 1980). Most of the fear arises natu-
rally out of the circumstances of the handicap. Some
fear is generated unnecessarily by friends and profes-
sionals who want to persuade parents to behave in a
certain way.

Various studies have looked at parental insecuri-
ties involved in raising a handicapped child. Winder
(1958) interviewed a group of parents who met regularly
for counseling. They discussed the suffering and emo-
tional cost involved in raising a child with cerebral
palsy. Some believed their marriages had suffered,
some feared that they had neglected their other chil-
dren. Many resented the failure of relatives, friends,
or' neighbors to ‘understand and. accept. their child.
Other parents hesitated to identify themselves and
their child with a disability. Gibson (1972) wrote
that she had been unable to read about retardation for
the first twelve years of her son's life. The Bureau
of Educational Research of the New York City Board of
Education (1954) interviewed 64 parents of disabled
children in the fifth through eighth grades. A major-
ity of them revealed that strong feelings of irritation
and resentment were mixed in with their love for their
children.

McWilliams (1970) pointed out that the impact of

having a cleft child will depend upon the ego of the

parents and their ability to use various psychological
coping mechanisms. Featherstone (1980) explained how a
child's handicap attacks the fabric of a marriage: "It
excites powerful emotions in both parents. It acts as
a dispiriting symbol of shared failure. It reshapes
the organization of the family, and it creates fertile
ground for conflict" (p. 91).

All parents must face the questions of how far to
protect their children, how much independence to allow,
where to set limits. Parents of disabled children feel
this tension even more. Of the 123 families of chil-
dren who were at the Institute of Physical Medicine and
Rehabilitation in New York (1957), more than 80 experi-
enced difficulties in parent-child relationships. Some
of the parents felt unable to let their children
develop independence from them. Others reacted in the
opposite direction and pushed their children too hard.
Spock and Lerrigo (1964) reported that parents are more
apt to set an impossible ideal of perfection for them-
selves if their child has a handicap. They feel they
should never scold, never lose their tempers, and
always be ready to make more sacrifices.

Despite some grim realities, most parents do find
their fears diminish with time. Some parents feel
angry at professionals who fail to show them that the

future need not be as bleak as it looks (Featherstone,

1980). The medical profession is typically a target of
parental anger. Parents complain about the manner in
which their physicians present the initial diagnosis.
Bennett (1974) found that few people are pleased with
the way they find out about their child's handicap.
Different types of handicaps produce different
reactions in the children and in the parents burdened
with them. In exploring the attitudes of children in
Israel, researchers found that the socioeconomic status
related to attitudes toward disability (Chigier &
Chigier, 1968). Children from poorer neighborhoods
considered a physical disability (wheelchair necessary,
amputated hand, leg in brace) worse than a cosmetic
disability (obesity, facial disfigurement). Chi the
other hand, children from more prosperous neighborhoods
thought the cosmetic handicap worse than the physical.
Clifford (1969) studied 60 pairs of parents and 60
children with clefts (30 lip and palate, l7 palate
only, and 13 lip only). The children had a mean age of
7.15 months. In response to questions concerning the
cleft, husbands and wives significantly agreed with
each other on the severity ratings of their child.
Infants with more extensive clefts were seen as more
active, irritable, and less pleasant in personality

characteristics. The data suggest that the extent of a

deformity will influence how parents view their chil-
dren. Norval et al. (1964) reported that none of the
families they studied were placed in the "high stress"
group if their children had cleft lips only. Hill
(1956) found that parents of children with cleft lips
seemed to have a more favorable attitude than those
parents whose children had clefts of the palate or of
the lip and palate.

Despite difficult times, individual families even-
tually work toward their own solutions. McWilliams et
al. (1984) point out that less well-integrated parents
may do a fairly good job of parenting with a normal
baby, but they will have greater difficulty with a
handicapped child. Nbrval et al. (1984) conducted 51
interviews with mothers of cleft children. The data
indicated that younger parents experienced greater
stress with the cleft child than older parents. Over-
all, parents who were well-adjusted and secure seemed
to cope well with a handicapped child.

As the parents of a handicapped child must make
adjustments to cope with their situation, the handi-
capped child has the responsibility of learning to live
with a disability. A disabled child suffers not only
the discomfort of diagnostic and treatment procedures,

but he may also miss out on some of the activities that

normal children have as part of everyday life. How-
ever, requiring more physical care, a disabled child
usually receives more nurturance from his mother and
often from the whole family. Richardson et al. (1964)
reported that parents and teachers often give the child
less work to do and less responsibility to carry.

Jones and Sisk (1967) studied children's percep-
tions of other children's handicaps. Young children
were asked questions about pairs of drawings in which
one child was wearing leg braces and the other child
was identical except for wearing no braces. Five-year-
olds were likely to reject the drawings of the handi-
capped child, but younger children showed no differ-
ences in response to pictures of handicapped and normal
children. The data suggest that rejection of handi-
capped children may be more evident in school-age chil-
dren than in pre-school-age children.

Although there are some specific reactions that
children have to handicaps, more general effects have
been found. The self-concepts of a wide selection of
handicapped children were investigated in a summer camp
(Richardson et al., 1964). A group of handicapped and
normal children were asked to describe themselves and
others. In general, the handicapped children talked
more about handicaps than did normal children. The

handicapped boys discussed physical ability less than

normals. Spatial location was discussed less by the
handicapped. The authors proposed that these children
had limited spatial experiences, being unable to move
around so easily on their own and not having been taken
places by adults as much as other children. Handi-
capped girls talked more than normal girls and more
than handicapped boys about helping others. Comments
of the handicapped children indicated that they had
fewer interactions with people. Brantly and Clifford
(1979) studied 172 adolescents between the ages of 10
and 18 (100 normal, 51 with cleft palates, and 22
obese). The authors looked at such variables as cogni-
tion, body image, and self-concept. Body image mea-
sures were clearly reduced for the obese subjects but
not for the normal and cleft groups. Subjects with
clefts appeared to have higher self-esteem than did
normals. The authors suggested that the possibility of
denial or some other mechanism might account for these
feelings.

Harper and Richman (1978) administered The Min-
nesota Multiphasic Inventory (Hathaway & McKinley,
1951) to 46 adolescents with orthopedic problems and 52
adolescents with cleft lip and palate and mild-to-
severe facial disfigurement. The authors reported both

groups to be within normal limits for adolescents but

found that both showed inhibition as one of their out-
standing characteristics. While cleft subjects experi-
enced anxiety, self-doubt, and discomfort regarding
interpersonal relationships, the orthopedically handi-
capped became physically and psychologically isolated
from peer interaction. MacGregory (1951) conducted a
study describing 151 patients with varying degrees of
facial disfigurement. She reported that the majority
were upset about their appearance and that they "saw
their handicaps reflected in the reaction of others
toward them." The majority of patients suffered from
behavior difficulties including feelings of inferior-
ity, self-consciousness, anxiety, hyper-sensitivity and
withdrawal from social activities.

Kapp (1979) published a study of self-concept in
34 children with clefts between the ages of 11 and 13.
They were matched with 34 control subjects. The Piers-
Harris Children's Self-Concept Scale (Piers, 1969) was
administered to each child. The author found no sig-
nificant difference between the cleft and control sub-
jects on global self-concept scores. However, as a
group, both males and females with clefts expressed
greater dissatisfaction with personal appearance than

did those without clefts. The females with clefts

appeared to be significantly more anxious, less suc-
cessful in school, and more unhappy and dissatisfied
than the normal subjects or male cleft subjects.

Numerous studies have analyzed the personality and
adjustment conflicts that confront children with
clefts. In a study by Richman (1976) both the boys and
girls with clefts were rated by their teachers as hav-
ing significantly more internalizing behavior than
their peers in the control group and in the published
norms. On the other hand, Wirls (1971) concluded his
literature review this way:

In spite of the compelling theoretical basis

of social and psychological maladjustment in

children with cleft palate, the research

results have been inconclusive. If the

results tend in any direction, it is toward

the absences rather than the existences of

maladjustment (p. 126).
Few writers reveal definitive evidence to adequately
explain the wide variance that occurs in children with
clefts as they attempt to cope with their handicap.

Parents significantly influence their children's
attitudes and behaviors. Children model their behavior
on the behavior of people they love, people they
admire, and people who seem to be powerful. Therefore,
they often do what parents do and say and act like
their parents (Smart & Smart, 1978). McDonald and
Berlin (1979) proposed that the cleft child's emotional

adjustment depends on the way the parents work out

10

their own feeling towards it. Moffat (1961) stated
that ignorance on the part of parents may lead to feel-
ings of guilt, which later become hostility and rejec-
tion or overprotection, each of which is damaging to
the child's future usefulness to society. It would
appear then that a major focus of cleft habilitation
must be directed toward the parents. According to
Slutsky (1969), attention is typically focused on the
affected child. In reality, the parents often feel
themselves to be the affected ones. The professionals
need to inform and help the parents understand the con-
ditions. of ‘the cleft and. the treatment. procedures,
since the child will turn to the parents at home for
further clarification and reinforcement (MacDonald,
1979).

An element that must certainly affect how parents
respond to having a child with a cleft is the manner in
which they are informed about the defect and the kind
of counseling and support they receive (McWilliams et
al., 1984). Hill (1956) and. Spriestersbach (1961,
1973) reported that parents of children with cleft lip
and/or cleft palate are poorly informed. Dar, Winter,
and Tol (1974) were surprised that sophisticated and
educated parents expressed gross misapprehension or
superstitions as to the cause of the cleft. Slutsky

(1969) found that 76% of the mothers in his study had

11

no knowledge of what a cleft was prior to the birth.
Furthermore, 44% of the mothers expressed no knowledge
of the possible causes of clefting at the time their
child was 7 to 14 years old. The author claimed that
the most impressive outcome of the extensive contact
with parents in the clinic was "the revision of their
attitudes toward the deformity, greater acceptance of
the child's limitations, reduction of anxieties con-
cerning the child's future, and increased cooperation

in the total clinical process (Slutsky, 1969).

Statement of the Problem

There is evidence to suggest that parents want and
need more information about clefting and related prob-
lems than they are often given (Bradley, 1960).
MacDonald (1979) reported that parents desired printed
materials explaining the clefting condition. Parents
need adequate information to reply to relatives and
neighbors carrying misconceptions about the cause and
results of the defects. Spriestersbach (1973)
explained that the concerns of parents change over
time. When the baby is born, they ‘ worry about the
baby's survival, the spouses feelings, and the child's
appearance. Later, speech, dental needs, and social

development will become the primary concerns.

12

Walesky-Rainbow and Morris (1978) found that 87% of the
professionals in their study encouraged the parents to
provide information to their child. However, only one
professional stated that he thought the parents were
able to give their children accurate and sufficient
information about the cleft problem.

Information is beneficial for the healthy attitude
of the parent as well as the child. Barry (1965)
stated that the cleft individual's willingness to par-
ticipate in rehabilitative procedures is related to the
patient's acceptance of his disability and his expecta-
tions about rehabilitation. Factors which may influ-
ence: these considerations are ‘what. the child knows
about his cleft and what facts he has about the treat-
ment plan. Because children will often turn to the
parents at home for further clarification and rein-
forcement, parents need to be well informed (Walesky-
Rainbow & Morris, 1978).

Hill (1956) reported a positive relationship
between the amount of information possessed by parents
of children with clefts and the positiveness of their
attitudes toward the child and his potential. There is
tremendous opportunity for the acquisition of informa-
tion during each routine office visit with the various
professionals on a cleft palate team. Specialists tend

to communicate using professional terminology that is

13

unclear and confusing to parents. For various reasons,
parents may hesitate to question or ask for clarifica-
tion of the information. As a result, what seems obvi-
ous and straight forward from the professional's per-
spective may actually be confusing and unsettling on
the part of the parents. Procedures and surgeries take
place without a clear understanding by the parents or
the children about what is actually happening and why.
The confusion and misunderstanding undoubtedly hinders
the development of positive attitudes.

A child who has a cleft lip presents a different
problem from that of a child who has a cleft lip and
palate. In addition, some children may be affected by
other abnormalities and complications. Less extensive
clefts are easier for most parents to accept
(McWilliams et al., 1984). Hill (1956) reported from
his interviews and objective tests of 70 parents of
children with clefts that parents of children who had
cleft lips gave fewer responses suggestive of rejection
than did parents whose children had palatal clefts or
clefts of both the lip and palate. In addition to the
severity of the child's condition, parental attitudes
may be influenced by the degree to which the child's
deformity affects the overall family situation. Sev-
eral factors which may be influenced include relation-

ships between family members, finances, or employment.

14

The purpose of this study is to evaluate the fol-

lowing questions:

1. Are there any specific attitudes that
characterize parents of cleft palate
children?

2. Are there any specific circumstantial
conditions that typically create diffi—
culty for parents of cleft palate chil-
dren?

3. Do parents with positive circumstantial
conditions have "better" attitudes than
those with more negative conditions?

4. Do parents understand the terminology
used by professionals and does this
understanding affect their attitudes?

Chapter II

Methodology

WW

Questionnaires based on surveys from previous
studies were employed to assess parental attitudes and
circumstantial conditions. An additional section was
designed to determine parental knowledge of terminology
associated with the child's deformity. The attitude
section of the questionnaire was based on a scale con-
structed and used in a study by Hill (1956). Hill,
along with the faculty and several graduate students at
The Pennsylvania State University Speech and Hearing
Clinic, produced sixty-nine terms to describe the atti-
tudes or feelings parents might have about their cleft
palate children. Nine of the sixty-nine terms occurred
in every sample. Three of these terms were eventually
discarded because of their overlapping similarity in
definition. The remaining six terms were chosen to
represent the parental attitudes. For the purpose of
designing a series of statements pertinent to each of
the terms, Hill (1956) used the following definitions:

Acceptance - An experience, or feature of

experience or behavior characterized by a

positive (approaching) attitude toward
some concept or judgement.

15

16

Rejection - An experience, or element of
experience characterized by a negative or
antagonistic attitude with respect to some
concept or judgement.

Hostility - An attitude characterized by
unpleasantness, and by activity detrimen-
tal to the welfare of the individual or
group toward whom the attitude is
directed.

Embarrassment - An emotional condition marked
by unpleasant self-consciousness, and by
some degree of confusion and impulsional
conflict.

Guilt; - An. emotional state, in ‘which. the
individual is dominated by the belief or
knowledge that he has contravened some
social custom, ethical principle, or legal
regulation.

Overprotection - A tendency to exceed the
usual limits of parental control, result-
ing in prolongation of each stage of
biosocial maturation and overtraining in
immature, dependent behavior through sur-
rounding the child with restrictions,
interventions, and detailed instructions.

Hill (1956) proceeded with his colleges to con-
struct 48 statements which conformed to the definition
of each attitude. Nineteen trained judges (all members
of the faculty or graduate student clinicians at The
Pennsylvania State University Speech and Hearing
Clinic) categorized the 48 statements into six specific
attitudes. Agreement was generally high among these
judges, ranging from more than 80% to unanimous agree-
ment.' The least definitive statements were eliminated.

Finally, five of the most experienced clinicians at the

17

clinic individually chose the five items in each of the
six categories which they considered the most perti-
nent. The finalized attitude scale consisted of thirty
statements selected by this final series of judgements,
with each of the six attitude categories having five
pertinent statements.

Unlike Hill's (1956) study, the thirty attitude
questions in the present study were followed by five
alternative selections including strongly agree, agree,
unsure, disagree, and strongly disagree. The selec-
tions were ordered to reflect the least positive atti-
tude (number 1) to the highest positive attitude
(number 5). To randomly select the order in which the
attitude statements would appear on the questionnaire,
each of the 30 attitude statements was typed on a piece
of paper and placed in an envelope. The envelopes were

randomly drawn until all 30 envelopes were selected.

Acceptance

1. Parents of a child with a cleft should
treat him like any other child.

2. I feel sure that my child will do many
things which will make me feel proud.

3. Neighbors are naturally interested in
other's problems, so parents should
explain things to them.

4. Children with clefts can be helped to
lead happy, useful lives.

5. This child has brought us much happiness.

18

Rejection

1. I wish my child had never been born.

2. In a way it would be better if the Lord
had taken my child before he was a week
old.

3. It would be better for people not to have
a child if they knew it would have a
cleft.

4. I'd like to send my child away some place
until he would be made normal in every
way.

5. I would have adopted a child if I had
known mine would have a cleft.

Embarrassment

l. I seem to lose my presence of mind when
people show that they know my child has a
cleft.

2. When people ask me about my child I feel
flustered.

3. When people ask questions about my
child's cleft I feel confused and find it
difficult to answer.

4. I feel self-conscious when explaining to
people about clefts.

5. I feel ill-at-ease when someone talks
about cleft palate and cleft lip.

Hostility

l. I feel unfriendly toward people who look
at or ask about my child.

2. I resent having to explain my child's

condition to people.

19

When people ask me about my child I feel
angry.

I would like to tell the professional
people who have worked with our child how
much their attitudes have hurt my feel-
ings.

I often wish people would mind their own
business and not pry into my child's
affairs.

Overprotection

Guilt

1.

2.

A cleft palate child should be kept close
to his parents at all times.

Parents of a child with a cleft should
expect less of him than of other chil-
dren.

A child with a cleft should not be pun-
ished as severely as his brothers and
sisters.

Normal children can take care of them-
selves better than cleft palate children.

Parents should spend much more time in
the home with cleft palate children than
with other children.

I sometimes wonder what I did to cause my
child to have a cleft.

If I could undo some things I did before
my child was born, he might not have a
cleft.

A cleft palate child makes you wish you
had done things differently.

I wonder whether it was my husband (or
wife) or myself who caused our child to
have a cleft.

5.

The circumstantial conditions portion of the ques-
tionnaire used in this study contained items designed
to shed light on the personal and environmental factors
that impact the family and child affected by a cleft

condition.

20

I can't help feeling that something I did
caused my child's cleft.

addressed in a study by Spriesterbach (1973).

statements were included under seven major headings.

Financial and Professional Interests

1.

The family has experienced financial sac-
rifices in managing the child.

I worry about the ability to financially
support this child.

My employment has been stable.

I have had to adjust my employment status
to meet the needs of my child.

I believe that my present employment uses
and demonstrates my abilities.

Speech-Language and Audiology

1.

2.

I understand about the speech problems of
children with cleft palates.

I worry about what outsiders think of my
child's speech.

I am satisfied with the speech correction
therapy my child has received.

I understand the problems concerning
hearing.

I was warned about the possibility of a
hearing loss.

Many of these statements were similarily

21

Family Dynamics

1.

Personal

1.

2.

The child's illnesses , including proce-
dures for' managing' the c1eft(s), have
been upsetting to the family as a group.

This child was planned and desired by
both parents.

Family and friends have accepted this
child as they would any other child.

I am satisfied with my spouse's partici-
pation in the management of this child.

This child has caused tension in our mar-
ital relationship.
Beliefs

It is important to have other family mem-
bers living in the area for support.

Religious convictions have been a source
of comfort and stability.

It is important to actively participate
in spare-time activities such as movies,
dancing, sports, parties, trips, etc.

An important thing in this world is to be
physically normal.

Having a child with a cleft has caused me
to reassess my personal values.

Information and Decision Making

1.

After the child was born, I received ade-
quate information on the characteristics
of a cleft disorder and the possibilities
of treatment.

I was left with a feeling of hope after
the child's problems and treatment possi-
bilities were first explained to me.

22

Professionals have spent sufficient time
with me to explain to me about my child's
condition.

I have been given advice which was con-
tradictory to that which I received in
the initial counseling sessions.

I feel parent support groups are informa-
tive and beneficial.

Surgeries and Hospitalization

1.

2.

I am adequately informed about each sur-
gical procedure before it occurs.

My child has undergone too many surg-
eries.

Surgical procedures have produced the
expected results.

My child stays in the hospital too long
after surgery.

Hospitalization creates an inconvenience
for my family.

Child's Adjustment

Socialization

1.
2.

3.

My child is upset by classmates' teasing.
My child has trouble making friends.

My child plays well with other children.

Physical Development

My child finds his/her appearance dis-
turbing.

My child is healthy.

My child's physical development is appro-
priate for his/her age.

23

Educational Development

1. My child does not perform as well academ-
ically because of the cleft and its asso-
ciated problems.

2. I am pleased with the grades my child
receives in school.

3. A cleft condition effects a person's men-
tal ability.
Discipline

1. Because of the cleft, I find it harder to
punish this child.

2. My child feels he/she is disciplined too
harshly.

3. My child seems more disobedient than
other children.

Self-Image
1. My child is happy.

2. My child has a positive self-image.

3. My child is shy around peers because of

the cleft and/or its associated problems.

Each of the statements was followed by five alter-
native selections including strongly agree, agree,
unsure, disagree, and strongly disagree. The alterna-
tive selections were ordered to reflect the most nega-
tive circumstantial condition (number 1) to the most
positive circumstantial condition (number 5).

The final portion of the questionnaire included a

list of lo terms commonly used by professionals and

24

relating to the treatment procedures or conditions of a
cleft. The items were selected from an original list
of 30 terms frequently used by professionals in a cleft
palate clinic. Their common usage was confirmed by a
plastic surgeon not associated with this cleft palate
clinic. The final list of 10 words was thought to best
represent terms that are commonly used by profession-
ale.
1. Fistula
2. Pharyngeal Flap
3. Obturator
4. Hypernasality
5. Prosthodontist
6. Velopharyngeal Incompetence
7. P.E. Tubes
8. Occlusion
9. Otolaryngologist
10. Audiologist
The parents were asked to produce a definition that

best represented each term. The terms were scored as

follows:
0 = no definition attempted
l = attempted definition, incorrect
2 = weak definition
3 = strong definition

If the definition page was left completely blank, a
notation was made stating that there was no attempt at
defining the terms. In such a case, no score was given

for the definition section.

25

Included with the questionnaires was an informa-
tion section designed to acquire additional data on the
parent responding and the child for whom the question-
naire was completed. Items included specifics about
the parents and his/her years of education completed, a
check-list of services provided for the child, informa-
tion about the child's birth, age of siblings, and

other persons known to have a cleft.

gelection of Subjeete

The thirty-one subjects studied were selected from
among the parents of children with clefts treated in
the IMid-Michigan and Detroit areas. The ‘terms of
selection were that the subject be the parent (mother
or father) who was most involved in the planning and
procedures concerning the child and his/her cleft con-
dition. The child had to be affected with a congenital
cleft of (a) the palate or (b) both the lip and palate
and be within the ages of 5—14. The cleft of the
palate was deemed necessary to help increase the proba-
bility that some speech difficulties existed. Further-
more, the age range was specified as it relates to the
ages in which a variety of surgical and treatment pro-
cedures often take place. Previous studies have
reported that parental attitudes are often reflected in

the degree of clefting that exists in a child. It was

26

felt that this study related to a more severe clefting
population by eliminating responses from parents with
children that have only a cleft lip.

Subjects were obtained from two sources. A plas-
tic surgeon's office in the Detroit area pulled all
files of children who fit the specified criteria for
this study. Thirty files were reviewed, and the par-
ents of these children received the mailed question-
naires. Likewise, a cleft-palate clinic associated
with a hospital in the Mid-Michigan area pulled all
files (totaling twenty-eight children) who fit the
requirements specified. The clinic was responsible for
mailing the questionnaires to the parents of these
children. Neither the total number of cleft patients
at each clinic nor the number of patients fitting the
specified criteria for this study are known.

In its final form, the questionnaires designed for
this study were mailed to fifty-eight subjects. Sub-
jects were given the following instructions:

We ask that the questionnaires be filled out

by the parent who is most involved in the

planning and procedures concerning the child

and his/her cleft condition. Please read

each question carefully and circle the appro-

priate response as it relates to your child.

Note that the alternatives may be in a dif-

ferent order for each question. Please do

not consult a dictionary, other reference

materials, or other people. Notice both
sides of each page.

27

Parents were asked to return the questionnaires in the
self-addressed stamped envelope provided. Parents
receiving questionnaires from the plastic surgeon's
office were requested to return the completed question-
naires to this same office. In the same way, parents
whose children receive treatment at the clinic in Mid-
Michigan returned their completed questionnaires to the

clinic.

Chapter III

as s

Thirty-one (53%) of the mailed questionnaires were
returned. Of the 30 questionnaires mailed from the
private clinic, 19 (63%) were returned, while 12 (43%)
of the 28 questionnaires mailed from the hospital
clinic were returned. The general data about the par-
ents and their children with clefts are summarized in
Table 1.

An analysis of the general data revealed that most
of the questionnaires were completed by mothers. One
hundred percent of the subjects from the private clinic
who reported their marital status were married, and 58%
of the subjects from the hospital clinic indicated a
married status. Although none of the parents from the
private clinic indicated a single status, 25% of the
parents from the hospital clinic indicated a single
status. Some respondents from both clinics failed to
indicate a married or single status.‘

Most of the respondents indicated a high school

level of education. Parents from the private clinic

28

29

Table 1

General Data Concerning Parents and Their Children with
Clefts

 

 

 

 

 

 

 

 

 

Private Hospital
Clinic Clinic
(n=l9) (n=12)
Parent Information
Mothers Responding 79% 100%
Fathers Responding 11%
Both Responding 11%
Respondents Married 68% 58%
Respondents Single 25%
Reepondents Highest Ed.
Jr. High 5%
High School 47% 67%
BA/BS 21% 17%
Grad/Professional 16% 8%
Not Indicated 16% 8%
Known of a Cleft
Immediate Family 5%* 17%
Relative 21% 17%
Friend 21% 42%
Other 26%
None 47% 25%
Age of Child
3-6 47% 8%
7-9 21% 42%
10-12 21% 33%
13+ 11% 17%
Place of Birth
Home 8%
Hospital 95% 83%
Unknown 5%* 8%
Order in the Family
Only Child 21% 17%
Oldest of Other Children 21% 33%
Middle Child 16% 33%
Youngest Child 42% 8%
Number of Services Provided
3 '0% 8%
4-5 11% 17%
6-7 68% 58%
8+ 21% 17%

 

*These children were adopted.

30

who completed the questionnaires together had educa-
tional levels of BA/BS or Grad/Professional for each
parent.

The respondents in this study had little previous
experience with clefting in the immediate family (10%)
or with relatives (20%). Thirty-nine percent of the
subjects knew of friends or others with a cleft. An
additional 39% had not known of anyone with a cleft
prior to the birth of their child.

When developing this study, it was uncertain
whether the age of the children would influence the
parents' responses to the questionnaires. The private
clinic had a greater percentage of children in the low-
est age grouping (3-6). Both clinics had a similar
number of children in the upper age groupings (lo-13+).
The age distribution appeared to have no effect on the
final results as evidenced by similar scores from the

hospital clinic and the private clinic.

gesplts of the aptipude Scale

Eight-seven percent of the total respondents com-
pleted all items on the attitude scale. Four of these
questionnaires were returned with l to 3 questions
omitted. In order to compare total scores between

respondents, adjustments had to be made for those who

31

did not respond to all the questions. Data manipula—
tion consisted of determining the average response
score and multiplying it by the number of questions
omitted. This number was rounded off to the nearest
whole number, and a new total was obtained. The mean
score on the attitude scale from the private clinic
totaled 136.20. The mean score from the hospital

clinic was 128.50 (see Table 2).

Table 2

Scores on the Attitude Scale

 

 

Private Hospital

Clinic Clinic Combined
Mean 136.2 128.5 133.3
Standard Deviation 11.0 9.1 10.9
Average Response 4.5 4.3 4.4

 

An analysis was conducted to determine the per-
centage that each of the five alternatives were
selected on the entire Attitude Scale. Results from
the 926 total responses indicated that 89% were in the
'more favorable' region of the attitude scale (scores
of 4 and 5). A score of 3 (indicating uncertainty) was
included with the less favorable region of the scale
(scores of l and 2) because the attitude questions were

worded in such a way that the 'unsure' response

32

reflected a less positive attitude rather than a neu-
tral position as might be expected. Eleven percent of
the responses fell within these 3 categories.

A further analysis was conducted to determine
which items had a consistently greater number of
responses at the 'less favorable' end of the scale
(scores of 1 to 3). For the six attitude subgroups,
the responses falling into the less favorable region of
the scale were as follows: guilt (40%), hostility
(28%), embarrassment (11%), overprotection (10%),

acceptance (7%), and rejection (4%).

Besulps pf phe Cipcumspaptiai Conditions Scale
Seventy-four percent of the respondents completed
all items on the Circumstantial Conditions Scale.
Eight of these questionnaires were returned with 1 to 4
questions omitted. One respondent omitted 6 questions.
To allow for score comparison, data were manipulated as
described for the Attitude Scale. The mean score on
the Circumstantial Conditions Scale from the private
clinic totaled 184.70. The mean score from the hospi—

tal clinic was 170.60 (see Table 3).

33

Table 3

0 es n t e C'rcumstantia Condit'ons cale

 

 

Private Hospital

cunt; _C_l_in_ic_ 9.9m
Mean 184.7 170.6 179.3
Standard Deviation 11.7 20.4 16.8
Average Response 4.1 3.8 4.0

 

An analysis was conducted to determine the per-
centage that each of the five alternatives were
selected on the Circumstantial Conditions Scale. Of
the 1,387 responses circled on the Circumstantial Con-
ditions Scale, results showed that 80% of the respon-
dents indicated favorable circumstantial conditions
(scores of 4 and 5). Questions drawing the highest
percentage of these scores included:

1. I understand about the speech problems of
children with cleft palate.

2. Family and friends have accepted this
child as they would any other child.

3. My child is happy.

It was felt that the response of 3 (unsure) indi-
cated a more neutral position on this scale as opposed
to the attitude scale. Forty-five percent of the total
responses scored as 3 (unsure) pertained to the spe-

cific question about the informative and beneficial

34

nature of parent support groups. Questions drawing the
highest percentage of scores in the 1 and 2 range
included the following:

1. It is important to have other family mem-
bers living in the area for support (46%).

2. Hospitalization creates an inconvenience
for my family (42%).

3. Having a child with a cleft has caused me
to reassess my personal values (32%).

Twenty-nine percent indicated that their child was
upset by classmates' teasing. Twenty-six percent of
the families experienced financial sacrifices in manag-
ing the child and felt that the child's illness,
including procedures for managing the cleft, were
upsetting to the family as a group. Twenty-six percent
of the respondents felt they had not received adequate
information on the characteristics of a cleft disorder
and the possibilities of treatment. Twenty-six percent
also felt they had been given advice which was contra-
dictory to that which was received in the initial coun-
seling sessions. Unlike the attitude questionnaire,
the above items were dispersed across the 7 categories.

The private clinic was noted to have higher mean
scores than the hospital clinic on both the Attitude
and Circumstantial Conditions Scales. A t-Test indi-
cated that these differences were not statistically

significant at the .05 level of confidence. Therefore,

35

the attitude scores from both clinics were combined and
correlated with their corresponding circumstantial con-
ditions scores using a Pearson product moment correla-
tion. A correlation (3;.73) was found to exist between
the scores obtained on these two scales. This was sta-
tistically significant as it exceeds the .005 confi-
dence interval. These data suggest a positive rela-
tionship between a family's circumstantial conditions

and the attitudes they uphold.

Terminology

Eighty-seven percent of the respondents made an
attempt to define the terms as evidenced by written
material on the terminology page. It is unknown
whether the remaining 13% chose not to complete this
portion of the questionnaire or unknowingly missed this
last page. (Directions specified that questions
appeared on both sides of each page.) Scores were
determined by the author's comparison of the defini-
tions with standard textbook definitions based on the
scale found in Table 4. There was a total of 30 points
possible for this section (10 terms worth 3 points
each). The combined scores ranged from 3 to 30 points,
with a mean of 17.10 and a standard deviation of 8.30.

Certain terms were understood better than others.

At least 50% of the respondents correctly defined

Table 4

36

Distribution of Terminology Scores

 

 

 

 

0 1 2 3
No Incorrect Weak Strong
Answer Answer Answer Answer
Fistula 48% 19% 4% 30%
Pharyngeal Flap 19% 4% 55% 22%
Obturator 55% 19% 26%
Hypernasality 19% 15% 66%
Prosthodontist 26% 4% 70%
Velopharyngeal
Incompetence 63% 4% 15% 19%
P.E. Tubes 19% 31% 50%
Occlusion 55% 7% 7% 30%
Otolaryngolist 33% 7% 11% 48%
Audiologist 7% 4% 4% 85%
Average Percent 34% 5% 16% 45%

 

37

DXESEEeéeliEXI PEQEEDQQQD£1§EI 2L§L-§EQ§§I QEQIQEQXQQI:
egi_s_t, and audiologist. At least 55% of the respon-
dents wrote nothing or incorrectly defined the follow-
ing terms: fistula, Obturator, velophapyngeal incompe-
pepee, and occlusiop. Ehai'yngeal flap received the
highest percentage of 'weak' definitions. A. t-Test
revealed no significant difference between the two
clinics on the definition scores. Although respondents
were asked to define the terms without the assistance
of reference materials, it was suspected, based on the
complexity of their definitions, that some respondents
did make use of reference materials. Because of a lack
of certainty over the respondents' actual knowledge and
the overall pattern of low terminology scores, a formal
correlation analysis between the definition scores and
the attitude or circumstantial conditions scores was
not attempted. Overall low terminology scores would
seem to indicate a lack of understanding about certain
procedures associated with the child's condition.
Because of such low scores and uncertainty about the
validity of the definitions, a correlation analysis
between the terminology scores and the attitude or cir-

cumstantial conditions scores was not attempted.

Chapter IV

Discussion, Summapy, and Conclusions

Discussion

An analysis of the general data revealed that most
of the questionnaires were completed by mothers. This
indicates that mothers are typically the parent primar-
ily responsible for the child's treatment. Thirtyénine
percent of the parents in this study had little prior
experience with clefting in the immediate family or
with relatives. Hill (1956) found that 47% of the sub-
jects in his study had never seen a person with a
cleft.

The children from the private clinic were younger
in age than the children from the hospital clinic.
Although there was no statistically significant differ-
ence in mean attitude scores between the two clinics,
this study indicated that the respondents with younger
children showed a slightly higher mean attitude score.
On the other hand, Hill (1956) reported that parents of
children in the later stages of treatment were less

likely to suggest rejection and poor attitudes.

38

39

Subjects in this study appeared to have very
healthy attitudes as suggested by a high percentage of
positive responses on the attitude scale. Perhaps the
attitude scale used in this study was not sensitive
enough. However, the positive attitudes coincide with
results of previous studies. Hill (1956) developed the
attitude scale used in the current study. Rather than
including a 5-point scale for the responses, he
requested a yes/no response to each of the questions.
Hill reported a high percentage of favorable responses
to the attitude questions. He speculated that this
high percentage may have occurred because the items
were not discriminative enough. Numerous studies sup-
port the idea that most parents come to terms with the
deformity and handle the stress involved as they would
handle stress in general (Clifford, 1969; Slutsky,
1969; Tisza & Gumpertz, 1962; & McWilliams, 1984).

The majority of 'less favorable' responses were
indicated for the questions concerning guilt and hos-
tility. Hill (1956) also found guilt to be a recog-
nized difficulty along with overprotection. Noval et
a1. (1964) reported from their interviews of mothers
with cleft children that the highest stress factor was
the initial experience of guilt by both parents.

Spriestersbach (1973), Bradley (1960), and Moffat

40

(1961) all reported parental feelings of guilt involv-
ing the birth of a cleft child.

The questions concerning hostility involved the
reactions of parents towards other people who respond
to the child's deformity. Slutsky (1969) indicated in
his study that mothers reported anxieties about others'
reactions, and many mothers felt that others' reactions
hindered the acceptance process. Castellanos and
Stewart (1964) also 'reported. that. parents of cleft
palate children tended to avoid social contacts because
of the appearance of their child and others' reactions
to the child.

According to the present study, parents feel their
circumstantial conditions are rather positive. An
obvious negative circumstantial condition concerning
the inconvenience of hospitalization was indicated by
42% of the subjects. Forty-five percent of the respon-
dents were 'unsure' about the benefit of parent support
groups. Some questioned whether support groups
existed. It is uncertain whether the other respondents
attended such a group and were unsure about their help-
fulness or whether they knew of such a group but chose
not to participate. Pannbacker et al. (1979) concluded
from their study that parent support groups served a
useful purpose in providing parents with information

about the cleft condition. Such a group can provide an

41

environment for parents to ask questions and share
experiences with others who can relate to the emotional
and stressful factors associated with raising a cleft
child. Researchers and professionals need to further
investigate the benefit of parent support groups.

Most of the questions in the circumstantial condi-
tions section clearly implied a positive or negative
condition. However, it is felt that other questions
were not worded correctly to imply a positive or nega-
tive situation. Such questions were listed under the
'personal beliefs' subgroup. For example, 46% of the
subjects felt that it was not important to have other
family members living in the area for support. It is
not certain whether these parents even have family mem-
bers living in the area to know what support may be
given. On the other hand, these respondents may have
family living in the area, but the family is not sup-
portive or their support is not welcomed. Neverthe-
less, the responses to this question indicated that
other family members were not turned to for support.
Perhaps the support needs to come from professionals
who are directly involved in the care and treatment of
the child.

In another example, 32% of the parents did not
reassess personal values following the birth of their

cleft child. Previous studies (Featherstone, 1980:

42

Bradley, 1960: & Slutsky, 1969) reported that the birth
of a handicapped child caused parents to reassess per-
sonal beliefs about the importance of life and the
value of human relationships. However, it cannot be
assumed from the subjects in this study that negative
attitudes existed before the birth of their child.
Perhaps these parents highly regarded life and human
relationships so that adjustments were not necessary.
Approximately one quarter of the respondents felt
they had not received adequate information about the
characteristics of a cleft disorder and the possibili-
ties of treatment. They also felt they had been given
advice which was contradictory to that received in the
initial counseling sessions. These data coincide with
numerous studies supporting the idea of parents wanting
and needing more information about their children's
condition (Pannbacker, 1968: MacDonald, 1979; Slutsky,
1969: & Walesky-Rainbow & Morris, 1978). It is the
professionals' responsibility to supply the necessary
written material and verbal information about the
child's deformity and various surgical procedures. It
is also the parents' responsibility to read and pursue
the information, ask the necessary questions, and
attend informative and supportive groups where they may

share or acquire knowledge.

43

The original plan of analysis for the terminology
section involved a comparison of the parents' answers
with a list of definitions compiled by speech-language
pathologists, a physician, and a textbook. After
receiving the completed questionnaires, it became
apparent that such a comparison could not be made. In
addition to using vague descriptive language, the sub-
jects failed to define 34% of the terms. Furthermore,
it is uncertain whether some of the subjects used ref-
erence materials to assist in defining the terms. It
was apparent that the best-defined terms related to
professionals whom the parents interacted with in pur-
suing treatment for their child. The terms which were
not well-understood referred to specific procedures or
characteristics directly related to the child's condi-
tion or treatment. This confirmed the original hypoth-
esis indicating that commonly used terminology was not
explained to the parents. This indicated a need for
more informative communication. between professionals

and parents.

umm
Thirty-one respondents (mothers, fathers, or both)
completed questionnaires designed to elicit information

about attitudes, circumstantial conditions, and knowl-

44

edge of terminology concerning the birth and habilita-
tion procedures of a cleft palate/lip and palate child.
The attitude questionnaire included questions that
related to feelings of guilt, overprotection, embar-
rassment, hostility, acceptance, and rejection.
Responses indicated an overall high positive parental
attitude. Forty percent of the 'less favorable' atti-
tudes involved feelings of guilt and 20% involved
feelings of hostility.

Responses to the circumstantial conditions ques-
tionnaire also indicated rather favorable conditions
for these families. Despite the fact that most of
these children were involved with 6 to 8 different pro-
fessional services, the parents did not indicate that
the conditions were unfavorable. More than 25% of the
respondents indicated that (l) hospitalization created
an inconvenience for the family. (2) the family expe-
rienced financial sacrifices in managing the child, (3)
the child was upset by classmates' teasing, (4) the
child's illnesses and procedures for managing the cleft
were upsetting to the family as a group, (5) adequate
information about the disorder and treatment was not
given following the child's birth, and (6) contradic-
tory advice was given since the child's birth. Forty-
five percent of the subjects were 'unsure' about the

benefit of parent support groups.

45

Terminology concerning the child's disorder and
treatment procedures was generally not well-understood
by the parents. Those terms which referred to specific
professionals were understood better than terms which
referred to surgical procedures used in the habilita-
tion process. This indicated a need for better commu-
nication between parents and professionals regarding

the management of a cleft disorder.

Conclusions, Comments, and Suggestions for Future
Research

The present study was designed to evaluate the
following questions:

1. Are there any specific attitudes that
characterize parents of cleft palate
children?

On the basis of this investigation, it may be con-
cluded that parents of cleft children adjust and main-
tain positive attitudes with some feelings of guilt and
hostility. It is felt that the attitude scale used in
this study was highly effective in assessing a variety
of feelings that parents might possess related to their
cleft child. Future research might focus on the
parental feelings of guilt and hostility to determine
the basis of such attitudes. Perhaps feelings of guilt

may be alleviated with more information and communica-

tion about the causes of clefting.

46

2. Are there any specific circumstantial
conditions that typically create diffi-
culty for parents of cleft palate chil-
dren?

Hospitalization, financial responsibilities, and
procedures for managing the cleft are upsetting for
many families. Some parents felt they were not ade-
quately informed about the deformity and treatment pro-
cedures. It is suggested that some changes be made
with the Circumstantial Conditions Scale to improve the
clarity of the questions and to make the positive or
negative connotations more obvious. Additional
research needs to take an in-depth look at the struc-
ture of parental support groups and to investigate what
they have to offer for parents of cleft children.

3. Do parents with positive circumstantial
conditions have "better" attitudes than
those with more negative conditions?

.A positive relationship existed between the fam-
ily's circumstantial conditions and their attitudes
concerning the cleft. Overall attitudes and circum-
stantial conditions were positive for parents of cleft
children in this study. There is now a need to move
forward and focus on the factors that create the nega-

tive attitudes of guilt and hostility and the more neg-

ative circumstantial conditions.

47

4. Do parents understand the terminology

used by professionals and does this
understanding affect their attitudes?

Parents do not seem to understand the professional
terminology relating to surgical procedures in the
treatment program. A lack of understanding about the
disorder or treatment procedures may contribute to the
negative feelings of guilt and hostility. There is a
need for better communication between parents and pro-
fessionals. Professionals need to provide parents and
children with informative and graphic materials about
the cleft and the treatment procedures. They need to
provide an atmosphere where parents feel free to ask
questions and to discuss the child's habilitation pro-
gram. Better communication between professionals and

parents is necessary to create a brighter future for

the parents and children affected by a cleft.

48

Appendix

Informed Consent Letter

49

Informed Consent Lepter

You are asked to participate in a scientific
research study being conducted in the Department of
Audiology and Speech Sciences at Michigan State Univer-
sity. We ask that you be the parent who is most
involved in the planning and procedures concerning your
child with a cleft condition. You will be requested to
answer 2 questionnaires about attitudes and circumstan-
tial conditions that may influence the parents of a
cleft palate child. You will also be asked to define
10 terms concerning clefting. These terms are commonly
used by professionals but not always explained by them.
We ask that the terms be defined without assistance
from a dictionary, other reference materials, or other
people. -

Your participation is entirely voluntary. You are
free to discontinue your participation in the study at
any time, and there will be no penalty for withdrawal.
Results will be treated in strict confidence, and you
will remain anonymous. Within these restrictions, gen-
eral results will be available to you and may be pre-
sented at professional meetings or appear in appropri-

ate journals or other publications.

50

Please do not sign your name or identify yourself
in any way on any portion of the information. Your
confirmed consent will be indicated by your return of
the completed questionnaires. Your decision to partic-
ipate or not will have absolutely no effect on the

treatment your child has received or will receive.

51

References

52

References

Barry, J. (1965). Patient motivation for rehabilita-
tion. Cleft Pal J 2, 62-68.

Bennett, J. (1974). Proof of the pudding. keep;
pional Parent (May/June).

Bradley, D. (1960). A study of parental counseling
regarding cleft palate problems. A paper: Am Assoc
Cleft Palate Rehab. In McWilliams, B. J., Morris,
H. L., & Shelton, R. Lu Cleft Palate §pee h.
Philadelphia: B. C. Decker Inc.; and Saint Louis:
The C. V. Mosby Company, 1984.

Brantley, H., & Clifford, E. (1979). Cognitive self-
concept and body image measures of normal, cleft
palate, and obese adolescents. Qleft Pal J 16, 177.

Castellanos, M. C., & Stewart, M. (1964). Psychoso-
cial Implications in Plastic Surgery. In Converse,

J3 M. (Ed.), Recopspructive Plastic. Surgepy.
Philadelphia: Saunders.

Chigier, E., & Chigier, M. (1968). Attitudes to dis-
ability of children in the multicultural society of
Israel. J. of Health and Social Behavior 6, 235.

Dar, H., Winter, S. T., & Tol, Y. (1974). Families of
children with cleft lips and palates: Concerns and

counseling. Develop Med thld Neupel 16, 513.

Darley, F. L. (1955). The relationship of parental
attitudes and adjustments to the development of
stuttering. In Psychosocial Aspects of the Qleft

Palate Problem Vol. 1 Iowa City: University of Iowa
Press, 1973.

Featherstone, H. (1980). A Qifference in the Family:
Life With a Disabled Child. New York: Basic Books,
Inc.

Gibson, A. (August/Sept. 1972). Letter. Exceptional
EQEQQL-

53

Hathaway, 8., & McKinley, J. (1951). Minnesota Multi-

phasic Personality Inventory. New York: Psycholog-
ical Corporation.

Harper, D. C., & Richman, L. E. (1978). Personality
profiles of physically impaired adolescents. L

Qlin Psychology 34, 636.

Hill, M. J. (1965). An investigation of the attitudes
and information possessed by parents of children
with clefts of the lip and palate. Qleft Pal Bull
6, 3.

The Institute of Physical Medicine and Rehabilitation,
Children's Division (1957). Annual Report. In

Spock, B., & Lerrigo, M. O. Caring For Your Dis-
abled Child. New York: Collier Books, 1964.

Jones, R. L., & Sisk, D. A. (1967). Early perception
of orthopedic disability Exceptional Children 34,
42-43.

Kapp, K. (1979). Self-concept of the child with cleft
lip and/or palate. Cleft Pal J 16, 171.

MacDonald, S. K. (1979). Parental needs and profes—
sional responses: A parental perspective . gleft
Pal J 16(2), 188-192.

Mattson, A” (1972). Long-tenm physical illness in
childhood: A challenge of psychosocial adaptation.
Pediatrics 50, 801-811.

MacGregor, F. C. (1951). Some psycho-social problems
associated with facial deformities. In McWilliams,
B. J., Morris, H. L., & Shelton, R. L. glef: Palate
Speeeh. Philadelphia: B.C. Decker Inc., & Saint
Louis: The C. V. Mosby Company, 1984.

McDonald, E. T., & Berlin, A. J. (July, 1979). Pright
Promise The National Easter Seal Society for
Crippled Children and Adults.

McWilliams, B. J. (1970). Psychosocial development
and modification. In McWilliams, B. J., Morris, H.
L., & Shelton, R. I“ Cleft Palate Speech.
Philadelphia: B. C. Decker Inc., & Saint Louis:
The C. V. Mosby Company, 1984.

54

McWilliams, B. J., Morris, H. L., & Shelton, R. L.
(1984). Cleft Palate Speech. Philadelphia: B. C.
Decker Inc., & Saint Louis: The C. V. Mosby
Company.

Moffat, H. M. (1961). Counseling parents of cleft

palate children. American Associetion pf Cleft
Pelate Rehehilitetion Newsletter 4, 7.

New York City Board of Education, Bureau of Educational
Research (1954). The child with orthopedic limita-
tions. In Spock, B. & Lerrigo, M. O. a 'n 0

you; Di sableg ghilg. New York: Collier Books,
1964.

Norval, H., Larson, R. Parshall, P. (1964). The

Impact of the Cleft Lip and Palate Child on the
Pamily: A Preliminapy Supyey. St. of Minn:
Crippled Children Services.

Pannbacker, M. (1968). Congenital malformations and
cleft lip and palate. Clef; Pal J 5, 334.

Pannbacker, M., Lass, N. J., & Star, P. (1979).
Information and experience with cleft palate: stu-

dents, parents, professionals. Cleft Pal g 16, 198-
205.

Piers, E. V. (1969). Manual for the Piers-Hapris
Children's Self-Concept Scale. Nashville, Tenn:
Counselor Recordings and Tests.

Richman, L. C. (1976). Behavior and achievement of
cleft palate children, Qleft Pal J 13, 4.

Richardson, S. A., Hastorf, A. H., & Dornbusch, S. M.
(1964). Effects of physical disability on a child's

description of himself. thlg Develepmeht 35, 893-
907.

Slutsky, J. (1969). Maternal reaction and adjustment
of birth and care of the cleft palate child, Cleft
Pal J 6, 425-429.

Smart, M. S., & Smart, R. C. (1978). §chopl~hge ghil-
ren: eve o ment nd e ationshi s. New York:

Macmillan Publishing Co., Inc.

Spriestersbach, D. C. Evaluation of a technique for
investigating the psychosocial aspects of the "cleft
palate problem." In Pruzansky, S. (Ed.) Congehipel

55

Anamalies of the Face and Associated Structures.
Springfield, IL: C. C. Thomas, 1961.

Spriestersbach, D. C. (1973). Psychosocial Aspects of
the gleft Palate Problem Vol. 1 Iowa City: Univer-

sity of Iowa Press.

Spock, B., & Lerrigo, M. O. Qaring for Pour Diseblg
ghilg. New York: Collier Books, 1964.

Tisza, V., & Gumpertz, E. (1962). The parents' reac-
tion to the birth and early care of children with
cleft palate. Pedietpics 30, 38.

Walesky-Rainbow, P. A., & Morris, H. (1978). An
assessment of informative-counseling procedures for
cleft palate children. Cleft Pal g 15, 20-29.

Winder, A. E. (1958). A program of group counseling
for the parents of cerebral-palsied children. In

Spock, B. & Lerrigo, M. O. Caring fior You; Disabled
ghil_. New York: Collier Books, 1964.

Wirls, C. J. (1971). Psychosocial aspects of cleft
lip and palate. In McWilliams, B. J., Moris, H. L.,
& Shelton, R. L. Cleft Palate Speech. Philadel—
phia: B. C. Decker Inc., 8 Saint Louis: The C. V.
Mosby Company, 1984.