Effects of a self-management intervention on uncertainity, support, and stress in Ronald McDonald House mothers

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Effects of a self-management intervention on uncertainity, support, and stress in Ronald McDonald House mothers
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Small, Natalie Settimelli, 1933-
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Mothers -- Effect of sick children on   ( lcsh )
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Thesis (Ph. D.)--University of Florida, 1987.
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Includes bibliographical references (leaves 124-134).
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by Natalie Settimelli Small.
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Typescript.
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Vita.

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EFFECTS OF A SELF-MANAGEMENT INTERVENTION
ON UNCERTAINTY, SUPPORT, AND STRESS IN
RONALD MCDONALD HOUSE MOTHERS












By

NATALIE SETTIMELLI SMALL


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


UNIVERSITY OF FLORIDA


1987
































Copyright 1987

by

Natalie Settimelli Small






























To Joseph and Edmea Settimelli

my very special parents

Whose gift to future generations has been

a tradition of love--

Love of family, love of nature, and

love of learning.
















ACKNOWLEDGMENTS


I wish to acknowledge the following people who have enriched my

education and life.

Dr. Margaret Fong-Beyette, my committee chairperson, your positive

attitude enabled me to cope with the vagaries of clinical research,

while you reflected the professionalism of a dedicated woman in

academia.

Dr. Ellen Amatea and Dr. Barbara Melamed, your encouragement

started me on the path towards a doctoral degree.

Dr. Jane Myers and Dr. Hannelore Wass, my committee members, your

gentle prodding and warm enthusiasm kept me moving on that path.

The members of the Department of Pediatrics of the University of

Florida College of Medicine and the members of the Department of Social

Work Services of Shands Hospital, your support for making

hospitalization a more humanizing experience for pediatric families

enabled me to undertake this study.

My associates on the Board of Directors of the Ronald McDonald

House, I thank you for your dedication and for acknowledging the

importance of measuring the "magic" that occurs at the Ronald McDonald

House.

Ben Stevens, Dianne Downing, and Barney Aim, without your technical

assistance and kindness this study would have been exceedingly difficult

to accomplish.











Lucy Braun, Trish Cluff-Hallmark, and Georgie Ellis, your notes,

flowers, and balloons verified the importance of social support from

friends.

My father and brother, you encouraged excellence; and my mother, at

83, you continue to role-model the best in mothering behavior: love,

optimism, nurturance, and forbearance.

My children, Parker, Peter, and Carla, as unique personalities and

subjects in my parenting laboratory, you have managed to emerge as

caring, capable, and sensitive adults.

My dear friends, Katie and Vicky Small, your encouragement and

support have endeared you to me.

My husband Parker, your understanding, limitless patience, and

loving friendship have made my education meaningful, my parenting

satisfying, and my marriage fun.

I feel a special debt of gratitude to the hundreds of mothers of

seriously ill children, especially those in my current study, whom I

have counseled. They have shown me a concept of truth that runs in

literature from the time of the Greeks: that the human personality is

most resilient when it is under extreme pressure. They have also taught

me that when all options appear to be spent, there is a strength that

binds a mother and a sick child that transcends medical knowledge and is

a source of human survival.
















TABLE OF CONTENTS

PAGE

ACKNOWLEDGMENTS................................................ iv

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

ABSTRACT ................................. ....................... ix

CHAPTERS

I INTRODUCTION................................. ........ 1

Statement of the Problem............................... 10
Purpose of the Study................................... 13
Research Questions..................................... 13
Importance of the Study................................. 14
Definition of Terms.................................... 15
Organization of the Study............................... 17

II REVIEW OF THE LITERATURE.............................. 18

Crisis Intervention Theory and Illness................. 18
Impact of a Child's Hospitalization on Mothers.......... 24
Dealing with Pain and Incapacitation ................. 27
Dealing with the Hospital Environment and Special
Treatment Procedures.............................. 28
Developing Adequate Relationships with the
Professional Staff................................. 28
Preserving a Reasonable Emotional Balance............ 28
Preserving a Satisfactory Self-image ................. 29
Preserving Relationships with Family and Friends...... 30
Preparing for an Uncertain Future.................... 32
Coping and Mothers....................................... 33
Uncertainty....................................... 36
Social Support....................................... 39
Stress (Strain)....................................... 44
Counseling Interventions.............................. 48
Ronald McDonald Houses as Therapeutic Milieus........... 50
Summary............................................... 53











METHODOLOGY.............................................


Design of the Study.................
Population and Sample................
Procedures...........................
Control Group.....................
Experimental Group................
Treatment Variables and Instruments..
Dependent Variables..................
Uncertainty .......................
Social Support.....................
Stress (Strain)....................
Research Hypotheses.................
Data Analyses........................


IV RESULTS.......................................


Description of the Sample............
Testing the Null Hypothesis.........
Uncertainty........................
Social Support from Family.........
Social Support from Friends........
Stress (Strain)....................
Summary........... ..................


V DISCUSSION, CONCLUSIONS, AND RECOMMENDATIONS...........


Discussion........................
Total Population...................
Booklet Use.....................
Uncertainty.....................
Social Support from Family.........
Social Support from Friends........
Stress (Strain)...................
Limitations................. .......
Conclusions......................
Recommendations...................
Future Research...................


APPENDICES

A 1985 RONALD MCDONALD HOUSE SURVEY ....................


B DEMOGRAPHIC DATA.............................

C INTERVENTION AND EVALUATION.................


......... 104

......... 107


D INSTRUMENTS..... ........ .. ....... .....................


REFERENCES.............................................

BIOGRAPHICAL SKETCH.. ..................................


......... 124

......... 135


.................
.................
.................
.................


ijjllllll


Illilill
















LIST OF TABLES


TABLE PAGE

3-1 Summary Statistics of the Mothers' Characteristics....... 60

4-1 Pretest and Posttest Means, Standard Deviations, and
Ranges of Scores for Dependent Variables for Total
Population............................................ 74

4-2 Pretest and Posttest Means and Standard Deviations for
Total Scores and Subscales of Uncertainty.............. 76

4-3 Source Table for Analysis of Covariance of Uncertainty... 77

4-4 Pretest and Posttest Means and Standard Deviations for
Scores on Social Support from Family and Social
Support from Friends.................................. 79

4-5 Source Table for Analysis of Covariance of Social
Support from Family and Social Support from Friends.... 79

4-6 Pretest and Posttest Means and Standard Deviations for
Scores on Stress (Strain) Measures.................... 82

4-7 Source Table for Analysis of Covariance of Stress
(Strain)........................................... 83


viii
















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


EFFECTS OF A SELF-MANAGEMENT INTERVENTION ON UNCERTAINTY,
SUPPORT, AND STRESS IN RONALD MCDONALD HOUSE MOTHERS


By

Natalie Settimelli Small

August 1987
Chairperson: Margaret L. Fong
Major Department: Counselor Education

The purpose of this study was to determine the effects of a
self-management booklet on mothers who were registered at the

Gainesville, Florida, Ronald McDonald House. Ronald McDonald Houses, a

recent advancement, provide a home-away-from-home for families with a

hospitalized child.

Research has demonstrated that mothers who successfully cope with a

sick child typically adopt three behaviors: they learn the medical

situation through communication with medical staff and other mothers

(i.e., cope with uncertainty), they establish a social network (i.e.,
maintain social support), and they adopt a positive outlook (i.e., cope

with stress). The booklet Mothers Know Best was developed by the author










to educate mothers about these coping behaviors. Its purposes were to

encourage mothers to adopt a proactive role in asking questions of the

medical staff to reduce uncertainty, to take actions to promote their

own well-being, and to interact with other mothers at the Ronald

McDonald House.

This study determined the impact of the booklet Mothers Know Best

on decreasing uncertainty and stress and on increasing social support

from family and friends. The four instruments used in this study were

Mishel's Parent/Child Uncertainty Scale, Lefebvre and Sandford's Strain

Questionnaire, and Procidano and Heller's Social Support from Family and

Social Support from Friends Scales. The instruments were administered

as protests and 1 week later as posttests to 59 mothers. Following the

administration of the pretest to the 29 treatment group mothers, they

were given the booklet and asked to read it and use it.

Analyses of covariance revealed that the treatment group mothers

who used the booklet Mothers Know Best had significantly lower

uncertainty concerning their child's disease and higher levels of

perceived social support from friends than the control group. The

booklet did not have a significant effect on the mothers' perceptions of

social support from family or their stress. Because the booklet proved

to be beneficial to the mothers in this study, it was recommended that

it be used in the Ronald McDonald Houses and further tested in other,

comparable facilities.
















CHAPTER I
INTRODUCTION

If you can't have Christmas at home, the next best thing is the
Ronald McDonald House. I love being home this year, but I'm
frustrated because I don't have people to talk to. People with
healthy children just don't understand.
(A Christmas note from a mother who stayed at
a Ronald McDonald House for 13 months)

Hospitalization of seriously ill children has a profound effect on

mothers. Emotional contagion between a mother and child, as well as

personal and family problems that often arise simultaneously with the

medical problem, may result in maladaptive coping behaviors. When

hospitalization means that a mother and child are far from home and all

that is familiar, negative effects from hospitalization can be

exacerbated. To help this segment of the population--parents and

children in hospitals far from home--100 Ronald McDonald Houses have

been built and another 50 are in the planning stages (Jones, 1986).

These houses are safe, comfortable, and inexpensive. They are "a home

away from home" for families going through a medical crisis. Based on

crisis intervention theory, the question arises as to whether emotional

support can be enhanced in these Ronald McDonald Houses?

The high degree of maternal stress associated with children's
hospitalization is of concern to counselors and researchers not only

because maternal stress can be transmitted to children and contribute to

1












the distress of the pediatric patient, but also because of the effect on

the mothers themselves (Shaw & Routh, 1982). The magnitude of this

problem is indicated by the quantity of hospital admissions of children.

Each year in the United States, more than 5 million children are

admitted to hospitals for diagnosis or treatment. According to the 1986

annual report of the National Center for Health Statistics, in 1984,

there were over 14 million patient days for children under the age of 15

in short-stay (less than 30-day) hospitals.

A review of the relevant literature reveals that hospitalization,

or other health care experience, results in at least transitory changes

in family behavior, in the subjective assessments of family members, and

possibly in physiological indicators frequently associated with upset

(Thompson, 1986). A child's encounter with a health care setting also

often involves stress caused by separation from what is familiar;

painful experiences, such as injections; and the need to cooperate with

various procedures (Melamed & Bush, 1985). Mattsson and Weisberg (1970)

found children's behavior during an illness treated at home to be

unrelated to previous experience of maternal separation. However,

children who had limited experience with normal separation (e.g., being

left with a sitter or visiting away from home overnight) experienced

more anxiety in the hospital than those with separation experience

(Dearden, 1970). Children respond differently to illness and

hospitalization depending on their age, developmental level, and disease

entity. At least some portion of a child's reaction can be attributed

to the aversive properties of the setting itself (Traughber & Cataldo,

1982). In addition, hospitalized children, regardless of their age,












often feel abandoned by their parents, thus intensifying their anxiety

(Astin, 1977; Menke, 1981). As a result of the responses in their

children, mothers may exhibit anger, fear, and guilt.

Lack of understanding can hamper both mothers' and children's

coping ability and promote maladaptive coping behavior. When maternal

anxieties concerning treatments and medications are communicated to the

child, there can also be serious impact on the child's illness

(Langford, 1961; Rae, 1981; Skipper & Leonard, 1968). The emotional

contagion of a parent's inability to cope can coincide with a child's

inability to understand and accept illness (Barnes, Kenny, Call, &

Reinhart, 1972). Insight into emotional contagion in mother-child

interaction has been gained from recent studies of the relationship

between mothers' style of interaction or discipline with their children

and children's responses to treatment in medical or dental settings

(Thompson,1986). Children exhibited more active exploration of the

medical situation when calm mothers provided their children with

information and distraction rather than reassurance. Maternal

reassurance of children and overt maternal agitation were associated

with maladaptive child responses (Bush, Melamed, Sheras, & Greenbaum,

1986).

As hospital visitation and rooming-in policies become more liberal,
mothers of hospitalized children face new conflicts. Some mothers, for
whom hospitals are an aversive stimulus, try to avoid visiting their

children. Robinson (1968) concluded that fearful mothers do not take

advantage of hospital opportunities to be with their children, and Astin

(1977) found that stressed parents may subconsciously withdraw from












their children. Anxious mothers who do not visit their hospitalized

child may miss opportunities for gathering information about their

child's illness, which may then intensify anxiety (Alexander, White, &

Powell, 1986). In their research, Petrillo and Sanger (1980) found that

it may be advantageous for parents to be nearby, but not at, the sick

child's bedside. Confirming the beneficial effect of parents being

close to their hospitalized child, Oremland and Oremland (1973)

concluded that parents should be encouraged to remain nearby, but to

leave their child periodically so that the child develops trust in

parents and staff and learns that the parents approve of hospital

routines and the staff.

While researchers have revealed the importance of parents remaining

close to their hospitalized child to reduce the child's anxiety,

problems associated with parental anxiety continue to surface. Maternal

stress and maladaptive coping may be intensified when a child has a

chronic illness, such as cancer or cystic fibrosis, that requires

multiple or extended hospitalizations. Long-range hospitalization of a

child, with its resultant separation, has a stressful effect on every

member of the family (Ack, 1983). While different coping strategies may

be appropriate for different individuals, the method chosen by each

family member influences the adjustment of all others, and particularly

difficult problems may be caused by highly discrepant coping among

family members (Melamed & Bush, 1985). For the mother of a hospitalized

child, there is a cluster of concerns that have to do with the

seriousness of the problem, the physical burdens of the illness (such as

special diets or protocols), and the financial strain attached to












hospitalization. The mother must often cope with her uncertainty about

outcome; try to mitigate the child's fears, pain, and discomforts;

juggle her own expectations and past experiences; and maintain
continuing familial, occupational, marital, and personal role behaviors.

Although use of psychological preparation of children for hospital

procedures has become commonplace, the assumption that all preparation

is "good" has been questioned by research (Melamed, Robbins, Small,

Fernandez, & Graves, 1980). Cognitive level, age of the child, and

previous hospital experience play a role in the child's adaptation to

hospitalization and have an effect on the behavior of the mother of the

hospitalized child.

Personal and family problems during the hospitalization of a child

can intensify the stress of mothers. Mothers undergoing the anxiety

associated with a catastrophic illness are often enmeshed in the role

conflicts associated with being a wife, daughter, employee, mother of a

hospitalized child, and mother of well siblings (Chan & Leff, 1982).

Dependent, submissive mothers may suddenly find themselves in a strange,

dual role of mother/father for extended periods of time. Kubistant

(1981) maintained that the loneliness of separation from a primary

relationship can be actually physically painful for wives and husbands.

For divorced mothers, obligatory decision making with an ex-spouse

concerning the sick child may force continuation of a relationship that

would have ceased (Ahrons, 1981).

Loneliness and isolation are themes found throughout the literature
on mothers and the hospitalization of children. A mother who is
isolated from contacts with family and friends may find it easy to deny












the reality of her child's fatal illness. Far from home, a mother may

refuse to acknowledge that a child has a serious illness and delay

getting the help needed to carry on a normal lifestyle (Halligan, 1983).

Depression, overeating, smoking, and drinking--behaviors that may be

self-managed at home--can become a problem in the isolation of the

hospital environment (McBrian, 1981). Lonely mothers were found to have

lowered self-esteem, to be sensitive to rejection, and to be anxious

making decisions (Booth,1983).

The press of past events also determines how a mother responds to

the present crisis of a child's illness and the regression, withdrawal,

and displacement defense mechanisms she may employ. These defense

mechanisms, in turn, can alter mothers' perceptions of their situation

(Adams, 1979). When a mother finds herself watching her child face

death, a sense of tragic absurdity prevails. Not only is time

shortened, but its order is shattered as a mother realizes that her

child has not had time to begin to form life goals (Sourkas, 1982).

Finally, one of the greatest problems in maternal adaptation occurs with

the single parent who often lacks emotional support from a partner, has

socioeconomic problems, and depends on the seriously ill child for

emotional support (Adams, 1984).

Although they can play an important role in children's
hospitalization, until recently, fathers have been neglected in

research. Freudian theory, with its emphasis on the mother-child

relationship, has guided research on the parents of hospitalized
children. Research on the effect of separation on the hospitalized

child is rooted in the mother-child tradition and, therefore, almost












universally attributes the negative responses of children to separation

from mother rather than other attachment figures. As hospitals have

increasingly encouraged parent participation in the care of sick

children, a greater number of mothers than fathers have involved

themselves in their child's care, thus reflecting American society's

traditional view of parenting (Thompson, 1985).

Breaking from the tradition of mother-child research, Azarnoff,

Bourque, Green, and Rakow (1975) studied fathers' anxiety concerning the

hospitalized child, but found difficulty in getting father participation

in hospital-based research. Roskies, Mongeon, and Gagnon-Lebebvre

(1978) determined that the level of father participation with a sick

child can be increased through an intervention targeted for mothers.

Lord and Schowalter (1982) have reported increased participation by

fathers with hospitalized adolescents in recent years. However, in
1985, more than one-fourth of American families with children and more

than 60% of those who are black were headed by a single parent.

According to the United States Census Bureau (1986), the overwhelming

majority of the 8.8 million single-parent families are headed by women.

These statistics are influenced by the current trend of unmarried women

choosing to keep their babies and the increase in the divorce rate in

the United States ("One-parent Families," 1986). It can be anticipated,

therefore, that mothers will continue to be the chief caretakers of

children when they are hospitalized and will continue to need assistance
with their coping skills.

Health professionals who have seen the beneficial effects of the

Ronald McDonald House concept are advocating that use of community












services, like Ronald McDonald Houses, should be seen by health care

providers as an integral part of family support (Alexander et al.,

1986). By initiating environmental support, the McDonald Corporation

established the first, large American corporate effort to address the

needs of families with a hospitalized child. Ronald McDonald Houses

were founded to provide parents of hospitalized children with a homelike

atmosphere close to the hospital. Parents whose children are receiving

daily outpatient treatments in the hospital, such as chemotherapy and

radiation therapy, may stay at the houses with their children. Also, in

an effort to maintain family solidarity during the hospitalization of a

child, parents may bring siblings for weekend stays at the houses. The

first Ronald McDonald Houses opened in Philadelphia in 1974. Since

then, 100 houses have opened, including 10 in Canada, 2 in Australia,

and 1 each in Germany and the Netherlands. Seventeen houses opened in

1985 and of the 100 houses, none has closed. Attesting to the success

of the Ronald McDonald Houses is the fact that more than a million

families have chosen to stay at them (Jones, 1986).

Gainesville, Florida, a university town with a population of about

100,000 people, has 155 pediatric beds in its 450-bed, tertiary care,

Shands Hospital at the University of Florida. As of July 1987,

approximately 4,500 families have been housed in the 28-bedroom

Gainesville Ronald McDonald House (F. Armes, personal communication).

The study by Small (1985b) of 340 families who stayed in the Gainesville

house revealed that 15% of the respondents viewed the Ronald McDonald

House as a motel-like facility, whereas 48% viewed it as a place to

garner social support. Social support has been established as an












essential element in the management of crisis situations (McCubbin &

Figley, 1983). Therefore, it can be suggested that the Ronald McDonald

House is providing social support to families, and thus, helps reduce

the crisis experience of parents.

From a theoretical framework, crisis intervention theory and social

support theory provide a paradigm, or structure, for the development of

further research on mothers of hospitalized children (McCubbin & Figley,

1983). Proponents of crisis theory maintain that whenever stressful

events which threaten biological, psychological, or social integrity

occur in a person's life, disequilibrium occurs to some degree along

with the possibility of a crisis (Aguilera & Messick, 1986; Melamed &

Bush, 1985). In crisis, a person may be confronted with many stressful

events occurring simultaneously. The person may be filled with

uncertainty and not know what has occurred, let alone which event

requires priority in problem solving (Aguilera & Messick, 1986).

In his study of the crisis experience, Davis (1963) maintained that

a central emotional theme of families indicating a need for intervention

was the feeling that the family was no longer "like everyone else." The

shift in the family's self-image, from a group more or less like other

families with a "normal" quota of satisfactions and troubles, to one

that had been "singled out" for misfortune constituted one of the most

alienating features of the crisis experience.

Moos and Tsu (1977) proposed that illness in a family constellation
constitutes a life crisis that exacerbates any ills evident in the

family system. The cognitive operations and coping skills of a family

will determine whether, when challenged by illness, the family members












adopt adaptive or nonadaptive behaviors in dealing with the stress of

illness. Consequently, for the mother of the hospitalized child, the

counselor who wishes to enhance coping skills may introduce an

intervention that encourages mothers to take a proactive role in solving

problems associated with the stress or strain of illness.

When a child is hospitalized, it is a time of crisis which calls

for coping by the entire family, but especially by the mother. Ronald

McDonald Houses are now available so that mothers can remain close to

their hospitalized children and families need not be totally disrupted

during a child's serious illness. However, the question arises as to

whether the coping of mothers at the Ronald McDonald House can be

enhanced.


Statement of the Problem

In determining whether the coping of mothers at the Ronald McDonald

House can be enhanced, it is of interest to examine the known means by

which mothers of sick children cope. They cope by understanding the

medical situation through communication with medical staff and with

other mothers (coping with uncertainty), by maintaining a positive

outlook (coping with stress), and by maintaining social support (Figley

& McCubbin, 1983).

As reported in research studies on stress by Figley and McCubbin
(1983) on over 500 families with children with chronic illness, three

coping patterns, made up of coping behaviors, were identified that

parents use to manage family life. Maintaining a positive outlook on

life, maintaining social support and self-esteem, and understanding the












medical situation through communication with other parents are means by

which mothers of sick children retain their focus on family life.

Mothers' coping is directed at the maintenance of the family

integration, cooperation, and optimism; at the maintaining of social

support, esteem, and emotional stability; and at understanding the

medical aspects of the illness (Figley & McCubbin, 1983).

Family crisis theory can provide a base for counseling

interventions when a child is hospitalized. From such a crisis

framework, then, and keeping in mind the coping mechanisms which Figley

and McCubbin (1983) report in families with chronic illness, it can be

speculated that coping needs of a mother are related to cognitively

dealing with her uncertainty about her child's health, to management of

her own levels of stress, and to utilization of social support networks.

Research has been done on several interventions that have sought to

increase mothers' coping with hospitalized children. Although anxiety

can be intensified by the hospital system itself, current trends in

hospital practice (Roskies et al., 1978), as well as in psychological,

stress-point preparation for elective surgery (Wolfer & Visintainer,

1975), place increased emphasis on the role of mothers to alleviate

stress in hospitalized children. In the case of the child who requires

hospitalization, a mother may have varying degrees of involvement
ranging from delivering and retrieving the child to being an intrinsic

part of the child's care team with detailed instruction in the child's

medical protocol or surgical procedure. Coping may be even more

difficult for the conscientious mother with a sick or handicapped child.

Pressure may be heightened for her to cope well, because of her












knowledge of research which shows that parent-child interaction,

education, and preparation for hospitalization results in a less anxious

child (Gross, Stern, Levin, Dale, & Wojnilower, 1983; Kaplan, Smith,

Grobstein, & Fischman, 1976).

Didactic instruction, filmed modeling, support groups,

skill-building groups, media instruction, and booklets have been used

with mothers and children to reduce stress and have been found to be

generally beneficial (Meng & Zastowsky, 1982; Skipper, Leonard, &
Rhymes, 1968; Thompson, 1985; Visser, 1980). However, much maternal

anxiety around hospitalization is attributable to the "space" between

health care workers' understanding of parents' experience and parents'

own comprehension (Hayes & Knox, 1984). Often, hospital personnel are

unaware of the uncertainty and stress that fills a mother when her child

is an emergency admission (Rogers et al.,1984). It becomes obvious,

therefore, that interventions that help mothers to strengthen their

adaptive behavior should help them cope with the stress associated with

hospitalization of their children.

The Ronald McDonald House intends to provide physical and emotional

support to mothers (Small, 1985b). The Ronald McDonald House is a major

new approach but nobody has produced materials to increase Ronald

McDonald House effectiveness. In spite of the number and variety of

coping interventions available, no published research has revealed use
of a self-management booklet in the therapeutic milieu of the Ronald

McDonald House as an intervention to enhance mothers' coping. It should

be useful to combine a self-management booklet and the Ronald McDonald

House to help mothers who have a hospitalized child.












A self-management booklet was written that adapts the methods of

Anthony and Carkhuff (1976) for Ronald McDonald House families. Anthony

and Carkhuff translated knowledge about human relations skills into a

systematic training program for health professionals through structured

written exercises. In the self-management booklet, Anthony and

Carkhuff's goals of caring, communication, and comprehension are

incorporated to address the uncertainty, social support, and stress of

mothers while they are at the Ronald McDonald House.

Purpose of the Study

The purpose of this study was to determine the effect of a

self-management booklet on the coping of mothers who had a hospitalized

child and were staying at a Ronald McDonald House. The study was

designed to determine the impact of a self-management booklet on

decreasing uncertainty and stress (strain), and increasing social

support from family and friends.

Research Questions

This author addressed the effect of a self-management booklet on

mothers' perceptions of uncertainty, social support, and stress

(strain). Specific research questions were as follows:

1. Is there a difference in levels of uncertainty, after a 7-day

stay, between mothers at the Ronald McDonald House who receive a

self-management booklet and those who do not?

2. Is there a difference in levels of perceived support from

family, after a 7-day stay, between mothers at the Ronald McDonald House

who receive a self-management booklet and those who do not?












3. Is there a difference in levels of perceived support from

friends, after a 7-day stay, between mothers at the Ronald McDonald

House who receive a self-management booklet and those who do not?

4. Is there a difference in levels of stress (strain), after a

7-day stay, between mothers at the Ronald McDonald House who receive a

self-management booklet and those who do not?

Importance of the Study

Mothers who stay at the Ronald McDonald House have children with

problems that range from requiring relatively simple, nonthreatening,

noninvasive diagnostic procedures to children with terminal illness who

will die during the current admission. Crisis intervention theorists

such as Lindeman (1944) and social support theorists such as Lazarus and
Folkman (1984), have maintained that individuals undergoing personal

upheaval experience changes in their social support, tolerance for
stress, and ability to cope with uncertainty. Mothers of hospitalized

children confirm that contention. A self-management booklet that

addresses uncertainty, social support from family and friends, and

stress (strain) among mothers at the Gainesville Ronald McDonald House

could have several implications. Knowledge about the parents'levels of

uncertainty, reaction to stress, and social support could help health

care providers (counselors, psychologists, social workers, nurses, and

physicians) institute guidelines for educating and nurturing mothers of
hospitalized children. With a clearer picture of what the hospital

experience is for mothers, health care providers may teach the mother of

the hospitalized child how to be more assertive in getting answers to












medical questions surrounding the child; how to recognize the

behavioral, cognitive, and physical responses illness of their child

provokes in themselves; and how to find, promote, and utilize a social

support system.

Also, with poor doctor-patient communication as the single most

common cause of malpractice suits (Starr, 1982), this study may, in a

broader sense, assist in the delivery of health care in a new age of

medical cost containment, when economics is determining length of

hospital stay and supportive services following hospital discharge

(Freymann, 1986). Children are, and will continue to be, discharged

from hospitals "quicker and sicker" and the demands made on the families

of patients will intensify. In addition, a self-management booklet

could be disseminated to all Ronald McDonald Houses at a relatively low

cost. Also, the study has implications for the further use of crisis

intervention and social support theory as it relates to the Ronald

McDonald Houses. Finally, the study has implications for further

research.

Definition of Terms

A number of terms are used throughout this research and deserve

further elaboration and definition.

Mother--The natural, adoptive, or foster female caretaker with

legal custody of a hospitalized child.

Pediatric--Medical services treating diseases of children from

birth to 21 years of age. These include the divisions of

gastroenterology, neonatology, genetics, pulmonology, infectious












disease, general pediatrics, cardiology, hematology/oncology,

nephrology, neurology, endocrinology, surgery, and psychiatry.

Pediatric patient--A person of either sex, under the age of 21, and

single. These people and their families are entitled to use a Ronald

McDonald House facility.

Perceived social support--The extent to which an individual

believes that his/her needs for support, information, and feedback are

fulfilled.

Ronald McDonald House--An inexpensive, convenient, comfortable

hostelry for parents of hospitalized children. Built with corporate and

local funding, governed by a board of directors, and maintained by a

house manager, more than 100 Ronald McDonald Houses provide 1,300

bedrooms a night for families in crisis (Jones, 1986).

Self-management booklet--A booklet, written by the researcher and

judged appropriate by a panel of educational, counseling, and media

experts, that encourages mothers staying at the Ronald McDonald House to

take a proactive role in reducing uncertainty about their child's

illness, reducing their individual stress, and increasing their social

support.

Strain (stress)--A syndrome of physical, behavioral, and cognitive

symptoms that are elicited to varying degrees by environmental demands

upon an individual.

Uncertainty--In the model of perceived uncertainty in illness as

proposed by Mishel (1981), the characteristics of uncertainty in illness

reside in the nature of the stimulus, the characteristics of the

perceiver, or an integration between stimulus and perceiver in relation












to four illness events: vagueness, lack of clarity, ambiguity,

unpredictability.

Organization of the Study

The remainder of this study is organized into four chapters.

Chapter II is a review of the relevant literature on crisis intervention

theory and illness; hospitalization; uncertainty, stress, and social

support; counseling interventions; and Ronald McDonald Houses. In

chapter III the methodology of the study, including a description of the

population and sample, the sampling procedure, the instruments, the data

collection procedures, and the proposed data analysis are presented.

The results of the study are presented in chapter IV. In the final

chapter, chapter V, a discussion and interpretation of the results, the

limitations of the study, and recommendations for future research are

described.















CHAPTER II
REVIEW OF THE LITERATURE

In this chapter, literature related to this study is reviewed in

five topical areas: (a) crisis intervention theory and illness; (b)

impact of a child's hospitalization on mothers; (c) coping and mothers:

uncertainty, social support, and stress (strain); (d) counseling

interventions; and (e) Ronald McDonald Houses as therapeutic milieu.

Crisis Intervention Theory and Illness

According to crisis theory, three things happen: (a) a person in

crisis perceives a difficulty; (b) there is significance to the

threatening situation; and (c) there is a loss of resources for

immediate coping with the situation (Caplan, 1961). Crisis intervention

therapy is employed to restore a sense of equilibrium in the individual.

The work of Caplan (1961) and Lindemann (1944) form the background for

research in crisis intervention and gives insight into the impact of

serious illness on a family.

When facing a crisis, a person may be confronted with stressful

events occurring simultaneously with no awareness of what has occurred

and which event requires priority in problem solving. This state of

diseqilibrium is accompanied by anxiety and depression. Balance can be

restored when the distressed person has a realistic perception of the

stressful event plus adequate situational support and adequate coping












mechanisms. This combination results in resolution of the immediate

problem, regaining of equilibrium, and dissolution of the crisis

(Caplan, 1961).

The Chinese characters that represent the word "crisis" mean both

danger and opportunity. Crisis is a danger because it threatens to

overwhelm the individual. It is also an opportunity because, during

times of crisis, individuals are more receptive to therapeutive

influence (Aquilera & Messick, 1986). Transitions over the life span

predictably create stress within a family system and may move an

individual or whole family unit to a state of crisis. When an

individual in crisis is at a turning point and facing a problem that

cannot be resolved by using coping mechanisms that have worked before,

tension and anxiety increase and the person is caught in a state of

great emotional upset, unable to take action to solve the problem

(McCubbin & Figley, 1983). Crisis theorists have maintained that the

situational precipitating event for crisis may be "accidental" (e.g.,

sudden illness or death of a loved one) or "developmental" (e.g., entry

into marriage or birth of a child) and its potential for instituting a

crisis is a function of the emotional reaction of the individual and not

necessarily the event itself (Caplan, 1961).

Since a state of crisis is conceived to have growth-promoting

potential, in developing crisis theory, authors have most heavily
emphasized the nature of the individual reaction to whatever stressful

situation may have occurred (Calhoun, Selby, & King, 1976). Crisis

theory offers the advantage of characterizing a state which occurs

frequently in the life cycle of the individual or family and during












which the helping professions are apt to have access to people and are

likely to be active.

In a historical overview, Aguilera and Messick (1986) emphasized

the broad base of knowledge that has gone into the development of the

crisis approach to therapeutic intervention. Freud's principle of

causality stated that every act of human behavior has its cause in the

history and experience of the individual. An ego analyst versed in

Freud's theoretical contributions, Heinz Hartmann, postulated that a

person's adaptation in early childhood, as well as the ability to

maintain adaptation in later life, had to be considered. Sandor Rado,

in developing the concept of adaptational psychodynamics, emphasized the

immediate present without neglecting the influence of the developmental

past. Primary concern is with failures in adaptation "today." It was

Erik Erikson, however, who furthered the theories of ego psychology by

focusing on eight stages of psychosocial development, each with its

specific developmental tasks, that span the life cycle (Erikson, 1950).

Erikson's theories provided a basis for the work of Caplan (1961) and

Lindemann (1944) and their consideration of situational crises and

individual adaptation to current dilemma.

Caplan maintained that all the elements that compose the total

emotional milieu of the person must be assessed in an approach to

preventive mental health. The material, physical, and social demands of

reality, as well as the needs, instincts, and impulses of the

individual, must be considered as important behavioral determinants.

From his research, Caplan evolved the concept of the importance of

crisis periods in individual and group development.












Lindemann's (1944) theory of "preventive intervention" was intended

to prevent psychopathology and gave rise to the concept of contemporary

crisis intervention. Recognizing the potential for utilizing preventive

intervention programs, Lindemann and Caplan established the Wellesley

Project in 1946 which was the first community-wide program of mental

health of its kind (Aquilera & Messick, 1986). Lindemann chose to study

bereavement reactions in his search for social events or situations that

predictably would be followed by emotional disturbances. In his classic

study of bereavement reactions among the survivors of the 1942 Boston

Coconut Grove nightclub fire, Lindemann described both brief and

abnormally prolonged reactions in different individuals as a result of a

loss of a significant person in their lives.

The concept of crisis as formulated by Lindemann and Caplan refers

to the state of the reacting individual who is in a hazardous situation.

Not all individuals in a hazardous situation will be in crisis, though

there are certain conditions, such as death, that induce a state of

crisis of greater or lesser intensity to nearly all individuals.

Lindemann maintained that although pathological sequelae might appear,

the reactions are transitory adjustment struggles during a time of

crisis. Sequelae could be avoided by intervention that helped the

individual in crisis to identify, understand, and master psychological

tasks posed by the stressful situation.

Much of the work in intervention is, therefore, aimed at raising
the client's self-esteem by emphasizing the concrete facts of the

current situation and assisting the client's own efforts at changing

them by teaching specific skills in an organized, systematic way











(Puryear, 1979). Rapoport (1971), in discussing crisis intervention,

reported that adaptive resolution, that which serves to strengthen the
individual's or family's adaptive behavior, requires (a) accurate
appraisal of the crisis creating situation, (b) appropriate management

of affect to reduce tension while allowing for problem solving, and (c)
willingness to seek and accept help while mastering the problem. The

continuing research on life transitions and therapeutic intervention

underscores the importance of promoting individual strengths and
capabilities so that a person can successfully resolve crises on their
own, if possible (Figley & McCubbin, 1983).

As psychotherapy, crisis intervention is the informed and planful
application of techniques derived from the established principles of

crisis theory by persons qualified through training and experience to

understand these principles with the intention of assisting individuals

or families to modify personal characteristics such as feelings,
attitudes, and maladaptive behaviors (Ewing, 1978). A low-cost,
short-term therapy, crisis intervention is involved with solving the

immediate problems facing a client (Aguilera & Messick, 1986). From the

standpoint of intervention, the task is not to end the crisis, for

nature takes care of that. The task is to maximize the level of

functioning when the crisis does end (Jacobson, 1980).

As with the events around mass disasters, such as floods and
tornados that constitute crisis, the paradox of "ordering reality"
versus the "unreality of order" frustrates the investigator who tries to
describe the overlapping and disturbing events that occur when serious
illness strikes a family (Davis, 1963). The terminology of the












perceptual/interpretative process of crisis may be employed in

describing the process mothers undergo within the framework of a child's

illness. To see one's child healthy and active one day and to be

forced, a day or two later, to consider the likelihood of a child

becoming permanently handicapped or dying entails an alteration in

fundamental perceptions. Following, in part, the terminology used in

human disaster studies, Davis (1963) designated the developmental stages

of illness as crisis in families: the Prelude Stage, the Warning Stage,

the Impact Stage, and the Inventory Stage.

The Prelude Stage extends from the time mothers, in a state of

equilibrium, become aware that the child is not feeling well until they

apprehend some cue that the indisposition is not ordinary. The

commonplace appearance of the prodromal symptoms, such as a ubiquitous

virus with accompanying vomiting and diarrhea, often impart elements of

unreality to the whole crisis experience when an illness later proves to

be fatal.

Symptomological (i.e., dragging a leg), behavioral (i.e., a

4-year-old outdoing a 6-year-old in a tussle), environmental (e.g., a

local outbreak of an epidemic), or authoritative (e.g., an explanation

by a doctor) cues that block the mother's common sensical diagnosis of

the illness identify the Warning Stage. The more that a pathological

state is "brought on" through the willful action of the individual, the
more likely it is that the condition will be defined as a moral or

behavioral deviation rather than an illness (Yarrow, 1955). The Impact

Stage occurs when the passage of time and exacerbation of symptoms
convinces mothers of diagnosis. Interaction between doctors and mothers












during impact may produce ambiguous communication. Mothers may arrive

at the hospital determined to prove a doctor wrong and with a definite

agenda as to their child's care. Parents become initiated in the art of

"hearing between the lines." Within a few days of Impact, with its

accompanying feelings of despair, the Inventory Stage, with hopefulness,

occurs creating within mothers a fluctuating internal dialectic, as well

as the realization that the family has been singled out for misfortune.

This crisis of illness, in spite of its feelings of alienation, can be a

time of re-evaluation of the self and one's bonds with one's "fellow

man" (Davis, 1963).

Impact of a Child's Hospitalization on Mothers

In her family systems approach to therapy, Virginia Satir (1972)

likened the family to a mobile.

In a mobile all the pieces, no matter what size or shape, can be
grouped together in balance by shortening or lengthening the
strings attached, or rearranging the distance between the pieces.
So it is with a family. None of the family members is identical to
any other; they are all different and at different levels of
growth. As in a mobile, you can't arrange one without thinking of
the other. (p. 119)

For the mother of a sick child, hospitalization demands adaptations that

touch every aspect of her role as a woman and her relationships with

each member of the family constellation.

The maternal role may be one of the most difficult and complex
roles in our society today (Pasley & Gecas, 1984). Besides demanding

insight and energy, parenting is further complicated by the fact most

couples are not prepared to assume the responsibilities of the role

(LeMasters & DeFrain, 1983). The maternal role becomes even more












complicated when a sick or handicapped child appears affecting each
individual within the system. In regard to research or practice,

counseling has not kept pace with other fields, such as pediatrics and

social work, on the effect of handicapped children on parents (Seligman,

1985). Goode (1984), in his study, observed that much family energy was

absorbed in deciding how best to present a handicapped child to others
and that the family's identity was inextricably tied to the identity of

the sick child. Presentation of the sick child differed according to

specific situations and audiences, and for the family, the whole point
of managing their presentation of the child was to understand what the

child's image (and thus their own) meant to others. Maternal behavior

may also hamper family function and contribute to the immaturity of the
family system by holding the disabled child less responsible than a less

disabled child for his or her behavior (Roessler & Bolton, 1978).

Researchers have shown that to study the hospitalized child it is
necessary to look at the effect of hospitalization on the individual

parent of the sick child. Gofman, Buckman, and Schade (1957) reported

the incidence and degree of maternal anxiety to be great in their study

to assess the prevalence of anxiety among mothers of hospitalized

children. Of 100 surveyed parents, all expressed some anxiety about the

hospitalization and 57% considered the anxiety to be overwhelming. More
recently, several investigators have looked at maternal concern around
child hospitalization. Skipper et al. (1968) found mothers' anxiety to

be high during children's surgery. In another study, Kessler (1969)
found maternal anxiety high in mothers with young children hospitalized
for the first time. Eighty percent of the mothers in Kessler's study












were moderately or severely stressed by the situation with anxiety

varying with social class. Middle-class mothers were more anxious than

either upper- or lower-class mothers. Frieberg (1972), in a survey of

mothers of hospitalized children, found the factors most commonly cited

by mothers as contributing to their anxiety were lack of information

about diagnosis and procedures, treatments, and children's medical

condition. Kazak and Marvin (1984) found that mothers of handicapped
children tended to be more vulnerable to the effects of stress than were

mothers in a control group or fathers in either a treatment or control

group.

Recent researchers have explored the emotional contagion that can

exist between the ill child and his/her mother. In a study of diabetic

children by Margalit (1986), the anxiety levels expressed by 20 diabetic

children, the level of anxiety ascribed by their mothers, and the

anxiety levels of 20 healthy children were studied. The children in the

diabetic study did not form an emotionally deviant group in terms of

their expressed anxiety, although their mothers viewed them as

significantly more anxious than they judged themselves. The mothers'

own anxiety was the best predictor of their perceptions of their

children's anxiety. Bush et al. (1986), in an outpatient clinic study,

found that mothers who were agitated provided less information and

ignored their children more, suggesting a pattern of parenting rendered

less effective by the disorganizing influences of maternal anxiety.

Research on children and hospitalization supports the contention
that a person's cognitive approach to tasks and the choice of coping

skills will determine how one recovers from an illness (Thompson, 1986).












The impact of the hospitalized child on mothers may be appreciated
through examining the model of illness presented by Moos and Tsu (1977)

in which they outlined seven major adaptive tasks concerned with

illness. Adaptive problems the sick child's family encounters are as
follows: (a) dealing with pain and incapacitation, (b) dealing with the

hospital environment and special treatment procedures, (c) developing

adequate relationships with the professional staff, (d) preserving a

reasonable emotional balance, (e) preserving a satisfactory self-image,

(f) preserving relationships with family and friends, and (g) preparing
for an uncertain future.

Dealing with Pain and Incapacitation

Most children report the injection to be one of the most
threatening experiences in health care (Ellerton, Caty, & Ritchie,
1985). In a study of 128 school-aged children, 86% rated the needle as

stressful and 36% rated physicians as stressful. Shaw and Routh (1982)

studied the effects of parental presence during an injection on the

behavioral responses of 18-month-old and 5-year-old children. Crying

during the injection was found to be significantly more common among
children of both ages when parents were present. The researchers

interpreted these findings as supportive of maternal presence, proposing

that, under the stress of an injection, children may be more emotionally
upset in the sense of physiological arousal when their mothers are
absent than when they are present. The presence of mothers, they
suggested, may serve as a disinhibitor which permits free expression of
children's feelings.










Dealing with the Hospital Environment and Special Treatment Procedures

Separation from parents was identified by Vernon, Foley, Sipowicz,

and Schulman (1965) as a major factor contributing to the immediate and

posthospital psychological upset of preschool children. Research on the

impact of rooming-in to avoid separation anxiety has produced mixed

results. Thompson (1985) and Lehman (1975) reported that children of

rooming-in parents were more aggressive in the hospital than were

others. This is, Lehman (1975) suggested, a reflection of the greater

security felt by the children in the presence of the parent. Research

on posthospital effects associate rooming-in with a reduction of

postoperative complications (Brian & Maclay, 1968; Lehman, 1975).

Developing Adeauate Relationships with the Professional Staff

As with the family with a child on hemodialysis, Levy (1979) found

that family members are often extremely angry for being taken for

granted and having expectations placed on them without any exploration

concerning the impact of illness directly upon themselves as opposed to

its impact upon the ill member. Many family members have expressed a

great degree of anger that the congratulations of the professional team

for success of the patient in treatment is rarely expressed to the

family member whose role may have been a great one in augmenting or even

being instrumental in the patient's coping with and successful adherence

to the medical regimen.

Preserving a Reasonable Emotional Balance

The unspoken quid pro quo of the marital relationship may be
disrupted by the emotional demands of a child's illness. Walker (1983)












maintained that guilt, helplessness, difficulty in reversing an
established pattern of anticipatory mourning, and a feeling of isolation
all play their part with the mother of the hospitalized child. It is

only by examining the individual ways in which the parent-child
coalition is maintained, protected, and even intensified by interaction

with other systems (e.g., the nuclear and extended family systems, the

family system in the previous generation, and the medical system) that

we can understand why some coalitions have become so resistant to
change. In a study by Velasco de Parra, Davila de Cortazar, and
Covarrubius-Espinoza (1983) on adaptive patterns of 10 families with a

leukemic child, all parents described a decrease in their activities as

a couple, as well as a diminution in the frequency and quality of their

sexual relations. The main topic of conversation and/or discussion, if

not the only one, became the child's disease, and in 80% of the cases,

the patient began to sleep with the parents soon after the leukemia was
diagnosed. Many parents seem to be grieving for a lost child even as

they interact with their living-but-sick or handicapped child. In the

case of seriously ill newborns, the perfect child fantasized by both

parents, independently, sometimes unconsciously, throughout the

pregnancy, has died before he or she could ever come fully to life

(Trout, 1983).

Preserving a Satisfactory Self-image

Young children who are not given reasons for hospitalization may
conclude they are being punished or sent away because they misbehaved.
This may contribute to a set of assumptions about their worth,












reciprocity, and their capacity to limit helplessness and gain
nurturance (Frears & Schneider, 1981). Difficulty in maintaining a
positive self-image can be intensified when the person who is ill is
separated from the family or undergoes changes in appearance and bodily

functions as well as such unpleasant feelings as anger, guilt, and
helplessness (Feuerstein, Labbe, & Kuczmierczyk, 1986). Loss of hair,
jaundice, stunted growth, obesity, or amputation are sources of great

distress for both the child and the parent. Each family member must
find ways of coping and maintaining a positive self-image. Many parents
are counseled now about the positive value of school in the overall
adjustment of even seriously ill children (Waechter, 1984). Waechter
also found that those children with fatal illness who had a greater
opportunity to discuss their fears and concerns about their future and
present body integrity expressed less specific death anxiety. This
finding supported the hypothesis that understanding acceptance or

permission to discuss any aspect of an illness may decrease feelings of
isolation, alienation, and the sense that the illness is too terrible to
discuss. Thus, each member of the family is involved in the task of
preserving a satisfactory self-image.

Preserving Relationships with Family and Friends

Although intrapersonal factors such as an individual's age,
personality style, and mechanisms for coping with the mourning and
adjustment processes are significant for the patient's rehabilitation
after injury, a major interpersonal factor in recovery is the patient's
family (Hendrick, 1981). This applies even when the family members are












going through a traumatic event themselves. The family of the spinal

cord-injured patient experiences a shock reaction which parallels that

of the patient (Eisenberg & Gilbert, 1978). In a study of 30 families
with chronic illness, Penn (1983) found over one-half the families with
chronic illness were extremely resistant to change. Two coalition
configurations surrounding, as well as within, the families were
observed. The expected coalitions form inside the family (e.g., parent
and child); however, due to the permeable boundaries of a family with a
chronic illness, coalitions also occur outside the family dynamics
between a family member and people outside the immediate family circle.
In tracking interactional events around the coalitions inside the
family, Penn (1983) discerned a form of binding interaction that acts to
hold the family in stasis. The family's resistance to change seems
equal to the strength of these interactions holding them in stasis. In
families with chronic illness there is an open sanction for the parent

and child alliance. It does not have to become covert since the system

is not considered pathological; there is no secrecy, no disqualification
of meaning, and the parents do not change sides as they do in
pathological systems. Somehow the members of the system refuse the
choice of other alliances during the span of the illness, as if to
change any other part in the system would further injure the family and
its ill member. It is within this framework that a family will
determine whether it will manage an illness or be managed by it.

Siblings of ill children report a high number of changes in
feelings and behavior (Craft, Wyatt, & Sandell, 1985). Siblings who
receive limited explanations of the ill child's condition reported more












changes than those given no explanation. It is possible that a vague

explanation by parents creates anxiety. Of particular importance, the

most desirable outcome resulted from open explanations. Sibling

perceptions of parenting showed parents to be less lenient, preoccupied,

spending less time with the siblings, and less easily angered. The

effects of parenting on sibling reaction are illustrated by the finding

that siblings who perceived their parents to be angered more easily

reported increased changes. When siblings are not told about the

seriousness of the disease while the leukemic child is alive, problems

between parents and children are likely to arise after death (Kaplan,

Grobstein, & Smith, 1976).

Preparing for an Uncertain Future

Once the determination has been made that death of a hospitalized
child is inevitable, parents report they want intervention to help them

manage the issues around child death (Small,1985a). Parents may begin

to refer to the child in the past tense, showing evidence of

anticipatory grief (Adams, 1974). There are parents who refuse

categorically to accept the idea of death and are sustained by a level

of denial that is catastrophic when the actual loss occurs (Koch,

Hermann, & Donaldson, 1974). Even where there is genetic counseling for

parents with a child with an inherited disease, outcomes are uncertain.

Although parental emotions around the uncertain future of their child

range from denial to anticipation, researchers have shown that parents'

perception of information governs their thinking even when they have
some control over the future of a child. Evers-Kiebooms and van der












Berghe (1979) showed that with 200 couples, past reproductive experience

and parental desire for children explained much more of the variance in

reproductive outcome than did such variables as reproductive risk,

burden of the genetic disorder, education, background, or socioeconomic

status. Furthermore, the psychological state of parents under stress

and how they perceived the factual information seemed more important for

their decision than what the facts were (Lippman-Hand & Fraser, 1979).

When these adaptive measures around illness are demonstrated, it is

obvious the mother of the seriously ill child is contending with a

multitude of issues calling for her to exhibit maternal adaptation and

expertise (Sourkas, 1982).

Coping and Mothers

Coping resources are generalized attitudes and skills that are
considered advantageous across many situations. They include attitudes

about the self and the world and intellectual skills. Coping styles are

generalized coping strategies and coping efforts are specific actions

taken in specific situations that are intended to reduce a given problem

or stress. Meng and Zastowsky (1982) reported that subjects trained in

coping skills displayed less anxiety than did subjects in another,

unspecified control group. Coping strategies have been conceptualized

in many different ways and effective coping strategies could be of value

in lowering the anxiety of mothers of hospitalized children.

Coping, as defined by Lazarus and Folkman (1984), consists of the
constantly changing cognitive and behavioral efforts to manage specific

external and/or internal demands that are appraised as taxing or












exceeding the resources of the person. They made a distinction between

coping and automatized adaptive behavior. Coping is an effort to

manage, thus coping includes anything that the person does or thinks,

regardless of how well or badly it works. By using the word manage, the
researchers avoid equating coping with mastery. Managing can include

minimizing, avoiding, tolerating, and accepting the situation as well as

the environment. Coping is hypothesized to have two functions: (a) the

alteration of an ongoing person-environment relationship
(problem-focused coping) and (b) the control of stressful emotions or

physiological arousal (emotional regulation). An example of emotional

regulation would be a visibly anxious mother of a hospitalized child

visiting the intensive care unit in tears before her child's surgery.

An example of problem-oriented coping would be a mother asking the

doctor questions about her child's diagnosis, medical regimen, and
prognosis in order to gather information for her own education before
her child has surgery. It is often the combination of both forms of

coping that influence the outcome of stress (Feuerstein et al., 1986).

Lazarus and his associates have perhaps had the greatest impact on
the study of stress and coping (Feuerstein et al., 1986). According to

Lazarus and Folkman (1984), cognitive appraisal, or evaluation, of

potentially stressful events mediates psychologically between the
individual and the environment when the individual encounters a
stressful event. It is the individual's evaluation that determines
whether a stressor is harmful. The evaluation is, in turn, partly a
function of the resources available to the individual to neutralize or
tolerate the stressor. The individual continually re-evaluates










judgments made about demands and constraints characteristic of various

interactions with the environment and the various options and resources

available to meet the demands. The extent to which an individual

experiences psychological stress is determined by the evaluation of both

what is at stake (primary evaluation) and what coping resources are

available (secondary appraisal). Primary appraisal addresses the

question, "Am I OK or am I in trouble?" while secondary appraisal asks,

"What can I do about this situation?" Factors that can influence

secondary appraisal are a function of the individual's previous

experience with similar situations, general belief patterns, and the

availability of coping resources at that particular time such as

personal health, material resources, problem-solving skills, and level

of energy (Folkman, 1984).

The diversity of coping efforts available to the individual is
enormous and interest is aroused as to how mothers of hospitalized

children cope. Billings and Moos (1981) used a representative adult

community sample to focus on the role of coping responses and social

responses as intervening variables mediating the effect of life events

on personal functioning. Small but significant sex differences were

found. Women reported more use of active-behavioral avoidance and

emotion-focused strategies than men. Higher levels of education were

related to active-cognitive and problem-focused coping and less to

avoidance coping. Only modest differences in type of coping used were

revealed among different types of events. More active and task-oriented

responses were noted in coping with an illness than a death.

Folkman and Lazarus (1980) also found that health-related stressors
elicited fewer problem-focused and more emotion-focused coping than work












or family stressors. However, they noted that women were more likely to

use avoidance coping, which was associated with greater impairment of

functioning. This is congruent with the findings of Pearlin and

Schooler (1978), who also identified a tendency for women to use less

effective methods of coping than men. In the Holahan and Moos (1981)

study, these results may be accounted for by the fact that a majority of

the men were employed while a majority of the women were homemakers.

Assessment of the effectiveness of coping must consider the individual's

baseline level of functioning as well as the context in which coping

takes place. Thus, research on the coping of women with hospitalized

children could alter what is generalized about women and coping.

Uncertainty

Perceived uncertainty, a judgment about an event or situation, was
identified as one of the conditions contributing to a stress response in

hospitalized adult patients (Mishel, 1981). The characteristics of

uncertainty, as proposed by Mishel, may reside in the nature of the

stimulus, in the characteristics of the perceiver, or in an interaction

between stimulus and perceiver in relation to four general classes of

illness-treatment events. When an event generates uncertainty, it will

be judged as containing one or more of the following characteristics:

(a) ambiguity, (b) lack of clarity, (c) lack of information, or (d)

unpredictability. Successful psychological management of the ill child
is influenced by the effectiveness of the parents' coping with the

illness events (Wolfer & Visintainer, 1975). The general assumption in

the literature is that children are very sensitive to the emotions of












adults, particularly parents. When parents are able to cope with their

feelings, they can serve to reassure their child. Research results

indicate that mothers of hospitalized children live with considerable

uncertainty. Frieberg's (1972) research indicated that uncertainty

regarding procedures and treatment and lack of information was a source
of maternal anxiety. In a study by Falvo, Woehlke, and Deichmann (1980)

on patient compliance, the most important indication was the trend of

the relationship between patient compliance and perception of the
physician giving clear explanations about treatment and disease.

In a study by Barbarin and Chesler (1984) on families with
childhood cancer, a stronger association between coping and the quality

of relationships with medical staff was found than with any of the other

psychosocial outcomes associated with uncertainty, such as information

seeking and problem solving. Perceived uncertainty in parents of
hospitalized children can hamper their appraisal of events and coping
mechanisms (Mishel, 1983). Parents of seriously ill children may feel

they have lost control of their child's care. Parental role deprivation

can contribute to anxiety (Brazelton, 1976). Within the hospital

setting, tests and treatments done off-schedule or tests ordered without

the mother's knowledge or consent serve to enhance ambiguity.

During the past decade, there has been an increase in research in
the area of families of dying children. The advances in cancer therapy,
while prolonging life, have increased the uncertainty for families

whether or not their child will survive (Schowalter, 1986). Cure is now
spoken of in acute lymphocytic leukemia (ALL) where this was not

possible before. Koocher and O'Malley (1981), in "The Damocles











Syndrome," discussed the ambiguity and uncertainty of parents and the

pressures felt when a child has an illness that might or might not prove
fatal. It is still difficult, if not impossible, to kill cancer cells

without killing or damaging normal cells. Children treated for brain

tumors, especially young children, show diminished intellectual and

academic functioning (Eiser, 1981). Cranial irradiation and intrathecal

chemotherapy, especially when used in combination, are particularly
damaging to cognitive abilities in the treatment of ALL (Meadows &
Evans, 1976). There is still considerable debate as to how much

psychosocial disability accrues to children from exposure to severe,
repeated, or chronic physical illness. Koocher and O'Malley (1981)

indicated that more than one-half the survivors in their study show at

least mild psychiatric symptom formation.

Uncertainty will continue. With cost containment becoming a major
criterion for choice of treatment mode, one can assume that earlier home
care will become increasingly common for financial as well as

psychosocial reasons (Schowalter, 1986). Coupled with this knowledge

is the tension illness adds to family dynamics. Although some couples

claim that the issues around a dying child bring them together, most

couples experience significantly more disharmony in their marriage as a

result of the physical and psychological pressures that accrue (Koocher

& O'Malley, 1981). Thus, it would appear that maternal uncertainty
around hospitalized children will continue to be a problem for mothers.

To recover from the crisis presented by their child's illness,
parents must be able to understand and manage the situation (Hymovich,
1976). They need to receive specific explanations of the illness,












course of the disease, prognosis, and treatments and procedures the

child is receiving and also perceive, and accurately understand, the

information provided (Comaroff & Maguire, 1981). Although the need to

assess parents' comprehension, perception, and coping strategies has

been recognized, the role of parental perceptions concerning their
child's illness is sparse. To develop a theory on coping in parents of
ill children, quantitative measurement tools need to be developed and

significant perceptual variables influencing parents' responses need to

be identified (Mishel, 1982).

Social Support

Thus far, investigators have shown that social support is an
important means for helping parents cope positively with the stresses of

parenting. In her study of young mothers, Colletta (1981) found that

those with high levels of social support were more affectionate, closer,
and more positive with their children, while those with low levels of

support were more indifferent, hostile, and rejecting of their children.

Although support did not have a direct effect on parenting behaviors, it

did serve to mediate the effects of stress and depression. Support can

be thought of as the degree to which the individual has access to social

resources, in the form of relationships with others.

Cobb (1976) described social support in terms of benefits
associated with feelings of being loved and valued and belonging to a
network of communications and mutual obligations to others. In
distinguishing quantity versus quality of social support, Schaefer,
Coyne, and Lazarus (1981) suggested using the terms "social network" and












"perceived social support." Perceived support is more important than

received support in predicting adjustment to stressful life events

(Wethington & Kessler, 1986). A social network can be thought of as the
set of relationships of one individual and defined in terms of its

composition and structure (e.g., the number of people involved and the

number who know each other) or by the content of particular
relationships (e.g., friendship and kinship) (Schaefer et al, 1981).

Perceived social support involves the individual's feelings and thoughts

of how helpful the interactions or relationships are within the social
network.

Although there is no general agreement on what constitutes social
support, there is considerable evidence that an individual's
interactions with others plays an important role in that person's

response to stress. A lack of consensus continues to exist on what

actually constitutes social support (Vaux, 1985). Vaux viewed social

support as a metaconstruct with at least three facets: resources,

behaviors, and subjective appraisals. Support resources include

relationships and involvements that are potential sources of supportive

behaviors and feelings that one is supported. These resources are

assessed through network measures. Supportive behaviors are specific

acts such as listening and comforting. Subjective appraisals involve

the individual's perception of the amount and quality of support and
focus on satisfaction received and perceived quality. It includes the
belief that one is cared for and the availability of support. Vaux
(1985) further contended that it is important to distinguish between the
facets of support (resources, behaviors, and perceptions) and the modes












of support (emotional or advice/guidance) to analyze social support.

Vaux concluded that even when women report more support than men, they

do not necessarily report less distress. This variation in social
support across gender may be a function of biological sex differences,

but is more likely a function of gender differences in social roles

(i.e., one gender predominates in the role). Therefore, support may

have a greater impact on well being for women.

Zarski, Bubenzer, and West (1986), in a recent review of social
interest, stress, and the prediction of health status, reported
conflicting research results when frequency of hassles are associated

with poor overall health and number of somatic symptoms. Social

interest was consistently associated with high overall health, fewer

somatic symptoms, and high energy level. By using intervention
strategies designed to enhance the client's social interest, the health

practitioner can effect changes in the client's lifestyle.

In a study of 148 married adults, Ferrari (1986) found that parents
of chronically ill children perceive a lesser amount of social support

than do adults who parent healthy children. Ferrari's research

explains, in part, why moderately handicapped children and families are

likely to go longer before receiving intervention as social support

networks frequently respond in a supportive way when they perceive a lot

of support is needed.

A striking example of the mediating influence of social support on
stress is associated with the nuclear power plant accident at Three Mile
Island and the comprehensive study of that incident by Fleming, Baum,
Gisriel, and Gatchel (1982). They conceptualized the Three Mile Island











event as stressful because the residents reported a number of stress
symptoms after the accident (Flynn & Chalmer, 1980). The measure of

social support used was a 6-item scale assessing an individual's
perception of social support. The results indicated that three Three
Mile Island groups demonstrated greater evidence of stress across

psychological, behavioral, and biochemical measures than did the control

groups. Also, minimal social support was associated with a greater

frequency of stress-relevant problems for Three Mile Island residents,

whereas Three Mile Island residents with moderate or high levels of
social support reported fewer stress-relevant problems. The moderating

effect of social support was not uniform across all components of the
stress response, since all of the Three Mile Island residents had high

catecholamine (epinephrine and norepinephrine) levels by urine test.

Fleming et al. (1982) concluded that perceived support serves to

facilitate coping (psychologically and behaviorally), but does not
protect individuals from a greater degree of physiological arousal, as
indicated by high catecholamine levels.

In examining the role of social support and its significance for
mothers of hospitalized children, one has only to look at the work of

Bruhn and Philips (1984) to see its relevance. Bruhn and Philips
concluded the following:

1. Social support is dynamic, with its form and quantity varying
over time.

2. Social support has interactive, qualitative, and quantitative
dimensions that should be simultaneously addressed.

3. Perception of availability and need of support are important
factors for use of such support.












4. The need for support varies across life situations and life

cycle.

5. Social support is an aspect of daily living, although the

need for such support may vary in times of stress.

6. Changes in physical, psychological, and social functioning can

influence perception of need and availability of social support.

7. Individuals, groups, institutions, and communities must be

considered, from a systems perspective, to define social support

adequately.

8. Social support can exert positive and negative effects.

9. Social support can vary as a function of culture and

sociocultural factors must be considered when attempting to measure it.

10. Research should focus on the mechanisms of action of social

support in addition to its effects.

11. Longitudinal studies that incorporate psychosocial and
biological measures on cohorts over long periods of time are needed.

In recent research, Thoits (1986) reconceptualized social support
as coping assistance. If the same coping strategies used by individuals

in response to stress are those that are applied to distressed persons

as assistance, models of coping and support can be integrated. In

problem-focused coping, one can reinterpret existing circumstances so

they seem less threatening to the self or they can shift attention to
comparison with others less fortunate. Thoits would argue that sympathy

or empathy from similar others is a crucial condition for the seeking
and acceptance of coping assistance. Because others share the same

feelings, despite the social unacceptability of feelings, others are












less likely to reject the person experiencing them. Thoits proposed

that individuals must perceive empathic understanding in others before

coping assistance will be sought and accepted. Also, others who are

socioculturally or experientially similar to a distressed individual are

most likely to be perceived to be empathic.

This factor has particular relevance for the mothers of

hospitalized children and suggests that mothers may be a strong resource

for other mothers. Thoit's (1986) findings appear to corroborate the

findings of Lehman, Ellard, and Wortman (1986). They found that the

support provider is likely to be unhelpful if he or she is made to feel

anxious or threatened by the plight of the support recipient. This

finding is important because the social support field, until now, has

not considered the impact of stressful events on anyone other than the

individual experiencing those events (Heller, Swindle, & Dusenbury,

1986). Also of interest, and relevant to examining support for mothers,

is the work of Coyne and DeLongis (1986) which revealed that those who

most need social support may be too extended by their role overload or

poverty to be able to take advantage of support when it is available.

Stress (Strain)

A general review of stress (strain) can lend insight into the
impact a child's hospitalization has on mothers. Hans Selye (1956), a

pioneer stress researcher, viewed stress in terms of a nonspecific,

adaptive response of the body to any agent or situation. The degree of

response may vary as a function of the intensity of the demand for

adjustment. The same systemic reaction (general body response) can be











triggered by stress-producing agents (stressors) that are pleasant or

unpleasant. The theme of general stressors, or specific situations that

require some form of adjustment, were shown in the research of Holmes

and Rahe (1967) and continued in the work of Pearlin and Schooler (1978)

on individuals in multiple roles such as marriage partners, parents, and

workers. The stress-response is a complex pattern that may have

psychophysiological, behavioral, and cognitive components.

Psychophysiological response according to Pearlin and Schooler is

conceptualized as either a nonspecific or specific response to physical

as well as to psychological stressors.

Selye (1974) maintained that the choice of which type of behaviors

to observe is often complicated. Although many aspects of an

individual's behavior relative to stress could be important, no

comprehensive source of data has been available on the use of

self-report of behavior in studying stress (Feuerstein et al., 1986).

Cognitive assessment can refer to a wide variety of measures designed to

measure thoughts, beliefs, attitudes, and mood. Averill (1973) placed

emphasis on two components of cognitive control--information gain and

anticipated response--as determining mood. When female subjects kept

diaries, Eckenrode (1984) found that concurrent daily stressors and

physical symptoms, in addition to previous levels of psychological

well-being, were the most important direct determinants of mood. Life

events and chronic stressors indirectly affected mood through the

influence of daily stressors, physical symptoms, and psychological

well-being.

In examining stress in mothers of hospitalized children, the search
may have more meaning if stress can be associated with a theoretical











model. Reaching a generally accepted definition of stress or strain is

difficult, since there are several approaches or models to understanding

the concept of stress: response-based, stimulus-based, transactional,

and information-processing models. In order to understand mothers of

hospitalized children, it is useful to examine the interactional model

of stress for its proponents maintain that stress occurs through a

particular relationship between the person and the environment.

One version of the interactional model is the transactional model
of stress as proposed by Lazarus and Folkman (1984). They proposed a

cognitive theory of psychological stress, although stress is usually

defined as either stimulus or response. Lazarus and Folkman emphasized

stress as a relationship between the characteristics of the person, on

the one hand, and the nature of the environmental event on the other.
The individual is thought of as an active agent in the stress process,
and it is postulated that self-management of cognitive, behavioral, and

emotional coping strategies influence the impact of the stressor.

Lazarus and Folkman have identified three kinds of cognitive appraisal:

primary, secondary, and reappraisal. Primary appraisal determines
whether an event is irrelevant or stressful and the extent of the demand

on the person. Secondary appraisal is a judgment concerning what might
and can be done with available resources and reappraisal refers to a

changed appraisal based on new information from the person or the
environment. How the person responds to stress is thought to have
short-term and long-term consequences in terms of social and moral
functioning as well as somatic health. The interactional model allows
for individual differences and helps explain why all people under stress

do not experience ill effects.












Cox (1980) proposed models that focus on the transactional and
ecological nature of stress as well as the importance of the

individual's cognitive and psychological sets in evaluating the

stressors. The Cox model also specifies the existence of feedback

components, therefore, describing a cyclical rather than a linear

system. The model has five discernible stages. In the first stage Cox
identifies the existence of demands or stressors placed on the individ-

ual, such as a family member who constantly requires one's involvement.

The second consists of a person's perception of internal and external
demands and of the ability required to meet the demands, such as a
mother wanting to be with her hospitalized child when her employer is

threatening to dismiss her. Stress occurs when an imbalance between

perceived demand and perceived coping ability exists. Such variables as

personality, ego strength, and intelligence account for individual
variations in the cognitive appraisal of stress. The third stage of the
model represents the stress response, which is a method of coping with

multiple stressors, such as when a mother of a hospitalized child wants

or needs to work, but chooses to give up her job to be with her child

while self-medicating to stop migraine headaches. The subjective
emotional experience of stress is accompanied by cognitive, behavioral,

and physiological changes. The fourth stage is concerned with both the
actual and perceived consequences of the coping responses, such as when
the mother realizes that, regardless of what she does, she will soon be

both jobless and childless. Stress may continue when demands are not

met or negative consequences from failure are anticipated. The fifth
stage consists of the feedback that occurs throughout the system and may












shape events at any point in the system, such as when the mother

acknowledges to herself that her child probably will die, but that she
must go on living for the rest of her family. Feedback of appropriate

responses can enhance the individual's ability to adapt. Feedback of

inappropriate responses may intensify the stress response and cause
greater damage or may alert the individual to change a response, if

possible, or to seek intervention (Feuerstein et al., 1986).

Figley & McCubbin (1983), in their extensive review on the family
coping with catastrophe, reported on the results of McCubbin's study of

500 families with a child with chronic illness. This investigator

identified three coping patterns that parents use to manage life when a

child has a chronic illness: (a) maintaining an optimistic outlook, (b)
maintaining social support and self-esteem, and (c) understanding the

medical situation through communication with other parents and
consultation with the medical staff.


Counseling Interventions

A search of the relevant literature reveals little information on
interventions in use to decrease the uncertainty, decrease the stress

(strain), and increase the social support of parents of hospitalized
children. Many of the counseling and information-giving methodologies
surrounding a child's hospitalization have centered around

prehospitalization tours, hospital-oriented play, play therapy,

interviews, and support groups intended to lower stress for parents and
children, but few have been scientifically evaluated (Azarnoff et
al.,1975; Peterson & Shigetomi, 1982; Schmeltz & White, 1982; Thompson,












1985). Modeling films of children talking about their concerns facing
surgery have been evaluated and are in use at some hospitals (Melamed,

Dearborn, & Small, 1981; Melamed, Robbins, Small, Fernandez, & Graves,

1980; Vernon et al., 1965). These films, using real patients as actors

to insure cultural authenticity, are intended for children and parents.
They verbalize the feelings of children before surgery and desensitize

the family to the surgical procedure by taking a filmed tour for the
child through the preoperation procedures, the operating room up to the

point of the administration of anesthesia, and through a successful

postsurgical course (Small, 1980). Although little validated
information on interventions for mothers exist, from a study of

pediatric hospitalization and health care, Thompson (1986) concluded

that the likelihood of parents obtaining a maximum amount of information

or otherwise actively participating in their child's hospitalization, is

dependent on family demands and social characteristics, as well as

personal qualities of the parents. The cost of transportation and other

cultural and economic factors, rather than fewer coping skills, are just

as apt to be the reasons parents from lower social classes participate

less in their children's hospitalization than do parents in other social

classes (Earthrowl & Stacey, 1977).

In light of some of the research being done on the cost-effective
use of booklets for patient education, booklets might be considered as a

mode of intervention for enhancing the coping of mothers of hospitalized
children. A concerted effort for use of booklets as an intervention
strategy for enhancing the coping of patients, as part of an
educational, developmental approach to common problems has been












developed in the Netherlands for patient education (Visser, 1980). Of

particular interest is the fact that these booklets have been evaluated

for their effectiveness. Designed with specific goals and information

on a limited, structured amount of information, booklets were found to

be appreciated and read by most of the patients and the information

given was absorbed. Allen and Sipich (1987) have reported on a process

by which a university counseling center used and evaluated

self-management brochures that received a positive response. The

researchers found that one limitation to the use of self-management

brochures was that users may expect the brochures to present magical

solutions to complex problems. Self-management booklets may be more

effective than one-on-one contact with patients, they may be more

cost-effective, and considering shortened lengths of stay under

prospective pricing systems, they may have a particular appeal.

Pardeck and Pardeck (1984), in their research, found that bibliotherapy

is effective in treating sexual dysfunction, in increasing

assertiveness, promoting attitudinal and behavioral change, and in

fostering self-development.

Ronald McDonald Houses as Therapeutic Milieus

A recent advancement that has appeared on the American medical
scene to provide a therapeutic milieu for families with a hospitalized

child is the concept of the Ronald McDonald House. In 1969, when Fred

Hill of the Philadelphia Eagles football team had a 3-year-old daughter

with acute lymphatic leukemia, the Hills slept in waiting rooms and ate

out of vending machines during the frequent hospitalization of their












child. From this experience, Hill realized the need for a home where

parents could go to get away from the hospital for a time, to cook, do

laundry, and to talk to other parents. In essence, what was needed was

a homelike therapeutic milieu during the traumatic days of the hospital-

ization of a child. Hill, with the support of his fellow Eagles, raised

funds for a house to be purchased for the families of children who were

hospitalized. When local McDonald owners and operators became involved,

the first Ronald McDonald House became a reality in 1972 (Small, 1985b).

In Gainesville, Florida, families referred to Shands Hospital from
throughout the United States were sleeping in waiting rooms and eating

out of vending machines. A feasibility study and a pledge of seed money

by the McDonald Corporation encouraged a group of local citizens to form

a not-for-profit corporation to build a Ronald McDonald House (Small,

1985b).

In 1982, the 37th Ronald McDonald House opened in Gainesville, with

an expansion to the house added 2 years later, making a nightly refuge

for 28 families. Ronald McDonald Houses are mostly occupied by parents,

grandparents, and siblings visiting the hospitalized child. However,

children undergoing treatment, such as chemotherapy, may stay in the

houses while receiving daily treatments at the hospital. Ronald

McDonald Houses provide facilities where families, disrupted by illness,
can be reunited in an effort to bring order into their lives. The house

provides each family with a bedroom, with beds for a maximum of two

adults and two children, and a private bath. Guests are provided with

linens when they arrive and use the laundry facilities to return clean

linens when they check out of the house. Meals can be prepared in the












fully equipped kitchens where a selection of food is available, at no
cost, to families who cannot provide their own food. An optional

donation of $10 a night per family is requested to help meet the

operating expenses of the house (Small, 1985b).

Although each of the 100 Ronald McDonald Houses is operated by a
board of managers and has a house manager to oversee the functioning of
the house, these therapeutic settings, founded through corporate

initiative and maintained by corporate and local efforts, have no

equivalent in America today (Jones, 1986). The homes are currently

hospices for families in the United States, Germany, the Netherlands,
and Australia. However, the purpose for their existence is the same.

The houses are a home-away-from-home for families with a hospitalized

child and families perceive them as a source of support during a time of
family crisis (Jones, 1986). In a pleasant, homelike atmosphere,

families get to know other families with whom they have one thing in

common--concern for a sick child.

Therepeutic milieus are playing an increasingly important role in
the growth of 20th century pediatrics (Brodie, 1986). Since 1979, there

has been a sharp break in the pattern of government support for the
nation's children and elderly. Programs that aid children have suffered

drastic curtailment while those that support the elderly have risen
significantly. The 1983 federal benefits were estimated to be at $7,700

per person over 65 years and $770 for children. The government has left

to the family, regardless of its circumstances, the responsibility for
children. Advances in child health occur only when people dedicate
themselves to the task of protecting and providing for their future.












Reports on the future of American medicine indicate that by the
start of the next century hospitalizations will be limited to the very

ill and those with chronic illness (Starr, 1982). Much of the care

currently provided in the hospital will be relegated to ambulatory

settings (DeAngelis, 1986). The conflict between wanting to room-in, or

even to visit their child, and not being able to do so for economic

reasons, may increase anxiety levels of parents. Even when vast
resources exist to help parents with children at time of family crisis,

the nature of bureaucratic protocol necessitates manipulation to
maximize efficiency. Advanced technology will increase the lifespan of

many children, but will necessitate mothers spending time at the

hospital to become educated and more knowledgeable about care of their
sick child. In preparation for these trends for the future of pediatric
medicine, researchers are already advocating that health care providers

need to reach beyond the hospital to intensify efforts in urging

families to use community and social services, such as Ronald McDonald

Houses, as an intrinsic part of the family support system (Alexander et

al., 1986).


Summary

The results of published studies confirm that the hospitalization
of a child.is a traumatic event for a mother and can often precipitate a

situational crisis for the whole family. An examination of the coping
strategies of mothers revealed that decreased uncertainty about their
child's illness, decreased stress, and increased social support can
assist mothers in coping with their child's hospitalization. There was










54

some indication that a booklet could be effective in providing

information and counseling in a convenient, low-cost manner. Since

1972, 100 Ronald McDonald Houses have been established to provide

therapeutic milieus for mothers of hospitalized children. The work of

this researcher was the first attempt at a self-management booklet to

enhance the effect of the Ronald McDonald House for mothers.
















CHAPTER III
METHODOLOGY

This study was designed to determine whether a self-management
booklet introduced to mothers at the Gainesville Ronald McDonald House

could help them cope with having a hospitalized child. Of interest was

the immediate impact of the booklet on four dimensions of the stress

process that effect mothers of seriously or terminally ill children:

uncertainty about their child's illness, perception of social support

from family, social support from friends, and stress (strain).

Described in this chapter is the design of the study, the population and

sample, procedures, treatment, instruments, research hypotheses, and

data analyses of the study.

Design of the Study

A pretest-posttest design (Ary, Jacobs, & Razavieh,1979), as

illustrated in Figure 3-1, was used in this study. The first 30

mothers, meeting the sampling criteria, who registered at the Ronald

McDonald House, formed the control group. After all of these mothers

completed the study, the next 30 mothers who registered and met the

sampling criteria received the treatment. This quasi-experimental

design was utilized because of the potential problem of contamination if

a random sample of only some of the mothers in the residential facility



















(30C) 01 02 03 04 Tc 01 02 03 04

(30E) 01 02 03 04 T1 01 02 03 04



30C = 30 control subjects

30E 30 experimental subjects

01 = Uncertainty in Illness Scale--Parent/Child Form

02 = Perceived Social Support from Friends Scale

03 = Perceived Social Support from Family Scale

04 = The Strain Questionnaire

TC = Control, Ronald McDonald House only

T1 = Receive the self-management booklet Mothers Know Best while at

Ronald McDonald House


Figure 3-1. Experimental design for study











were receiving the treatment. The temptation to share the treatment

with a nontreatment mother would be great. This design separated the

treatment and control groups, preventing contamination.

Population and Sample

The population studied were mothers who stayed at a residential

facility--the Gainesville, Florida, Ronald McDonald House--a "home-

away-from-home" for families with hospitalized children. This

population consisted of mothers who were under stress, due to the nature

of their child's illness, the separation anxiety of being away from

home, and anxiety at not being able to spend nights at the child's

bedside. The population sample consisted of English-speaking mothers,

with a minimum ninth-grade education, staying at the Gainesville,

Florida, Ronald McDonald House for a minimum of 7 days. The children of

these women were being treated at Shands Hospital, a tertiary care

center at the University of Florida. This population closely resembled

the characteristics of 340 parents who stayed at the Ronald McDonald

House and who completed and returned surveys in 1985 for an earlier

pilot study (Small, 1985b). The survey was conducted by this researcher

in her capacity as a doctoral student in counselor education, as a

licensed mental health counselor in the pediatric division of the

Department of Social Work Services of Shands Hospital, as a member of

the Ronald McDonald House Board of Directors (fund-raising, decorating,
and operations committees), and as the pediatric liaison between Shands

Hospital and the Ronald McDonald House.

The pilot study (Small, 1985b) had revealed a number of issues
relevant for producing and evaluating an intervention for decreasing











stress in mothers. Mothers usually stay at Ronald McDonald Houses

because they live too far from the hospital to commute daily and because

they cannot spend the night with their child in a restricted or isolated

unit such as the newborn intensive care unit, the burn unit, the

pediatric intensive care unit, or the bone marrow transplant unit.

Presented in Table A-i (Appendix A) are the characteristics of the

residents of the Ronald McDonald House and their responses to the 1985

survey items. Of particular interest, relevant to social support at the

Ronald McDonald House, was the fact that up to 2 years after leaving the

Ronald McDonald House, parents reported maintaining a contact made while

at the House. Also, 21% of the respondents reported that they perceived

another parent as the person they would go to at the Ronald McDonald

House if they had a personal problem.

A review by the researcher of recent Ronald McDonald House

statistics revealed that as of February, 1987, the average stay was 6.1

days. Although children are going home from the hospital "sicker and

quicker" due to cost containment, use of sophisticated medical

procedures, such as bone marrow transplants, mean extended stays at the

Ronald McDonald House for some families.

All possible participants for the current study were identified

through the Shands Hospital admissions office, where mothers register to

stay at the Ronald McDonald House on a first-come, first-served basis.

Mothers at the Ronald McDonald House are anxious to be with their

children as much as possible. Therefore, for the mother's convenience,

data were collected at the hospital.

The sensitive nature of this research (mothers with seriously or

terminally ill children in very restricted areas of the hospital)











necessitated this study being carried out alone by the researcher who

has a counseling background, has a knowledge of hospital protocol and

infection control techniques, and has access to Ronald McDonald House

mothers. None of the subjects had met the researcher before being asked

to participate in the study. The data collection period to obtain 60

subjects (30 control and 30 experimental) was from February 24, 1987 to

June 7, 1987.

Although the nature of the study prevented random selection of

subjects, there were close similarities between the control and

treatment groups in terms of demographic variables. The mothers ranged

in age from 19-52 years with the control group mothers having a mean of

31.60 years of age and the treatment group 29.80. Although the mothers'

range of years of education was 9 to 17 years, the mean years of

education was 13.30 in the control group and 12.7 in the treatment

group. Mothers in the control group came a mean of 197.60 miles from

home and in the treatment group 177.60 miles from home. The mean age of

the sick child in the control group was 6.50 years and in the treatment

group was 5.20 years. The children of mothers in the control group had

a mean of 1.36 siblings and in the treatment group a mean of 1.03

siblings. The summary statistics of the variables are located in Table

3-1.


Procedures

Control Group

Within approximately 48 hours of registering at the Ronald McDonald
House, 30 eligible mothers were approached at the child's bedside by the











Table 3-1
Summary Statistics of the Mothers' Characteristics


Total Control Treatment
Variable (n 59) (n = 30) (n 29)*

Race

Black 8 5 3
White 51 25 26
Marital Status

Married 50 25 25
Divorced 1 1 0
Single 6 3 3
Separated 2 1 1
At RMH Before 15 7 8

Deaths During Study 2 1 1

Adopted Children 3 1 2

Transferred from Other 9 4 5
Hospitals
Reason for Current
Hospitalization

Medical 27 14 13
Surgical 24 12 12
Diagnostic 8 4 4
Child's Diagnosis

Malignant tumor 14 9 5
Nonmalignant tumor 2 1 1
Lymphatic cancer 4 2 2
Cystic fibrosis 5 4 1
Neurological disorder 6 3 3
Cardiac malformation 16 9 7
Gastrointestinal 3 0 3
abnormality
Respiratory abnormality 5 1 4
Another diagnosis/burns, 4 1 3
spinal cord injuries

*One mother failed to provide data.












researcher and asked to participate in this study. The first 30 mothers

who agreed to participate formed the control group. After verbal

consent was received from each mother, demographic information "A"

(Appendix B) was collected and each mother received a coded packet of
four questionnaires printed on machine-read forms. Although

instructions were printed on the instrument form, instructions were

reviewed with each subject and assistance was given, when necessary, in

filling out forms. This was done to facilitate the procedural aspect of

the study and to determine literacy of mothers. The forms were (a) the

Uncertainty in Illness Scale--Parent/Child Form, (b) the Social Support

from Friends Scale, (c) the Social Support from Family Scale, and (d)

the Strain Questionnaire. All subjects were advised that information

would be kept confidential and that the researcher would be the only

person to have access to identifying information.

The 30 control group mothers had private rooms in the Ronald

McDonald House and spent their days at Shands Hospital with their sick

children who were receiving appropriate patient services. Seven days

after registering at the Ronald McDonald House, mothers received a

second set of the questionnaires which were administered in the same

manner as the first set. Demographic information "B" (Appendix B) was

also collected at this time. Due to the vulnerability of mothers

undergoing life-threatening experiences with their children, the

researcher followed the administration of the posttest questionnaires by

counseling the subjects on any topics of particular concern to them.












Experimental Group

When all the data had been collected from the control group, 30
eligible mothers were obtained in the same manner for the experimental

group. The final treatment group sample consisted of 29 mothers as

number 30 did not complete the study when her child was discharged prior

to the seventh day. Demographic data "A" were gathered and coded

packets of the four questionnaires were administered to the mothers.

Mothers in the experimental group were given a copy of a

self-management booklet Mothers Know Best (advice from mothers who have

stayed at the Ronald McDonald House) and asked to read the suggestions

and to follow them. To assure that mothers read the booklet, they were

asked to write responses to the booklet's suggestions in designated

places in the booklet itself (Anthony & Carkhuff, 1976). The mothers in

the experimental group also had private rooms at the Ronald McDonald

House and spent their days with their children at Shands Hospital.

Seven days after administration of the questionnaires and receiving the

booklet, a second set of the questionnaires were completed by the

subjects and returned to the researcher. At the time the questionnaires

were completed and returned to the researcher, demographic information

"B" was gathered and the booklet was collected. As with the control

group, if desired, subjects received counseling on particular concerns
at this time. The booklet was then checked to see if the subject had

written in the booklet as directed. The number of entries the mother

addressed concerning uncertainty about the child's illness, social

support, and stress were recorded. The booklet was then photocopied and

the original returned to the subject to keep.











The University of Florida Health Center Institutional Review Board
determined that it was not necessary to obtain informed consent from the

subjects for this study as they viewed willingness to participate as

implied consent. Mothers were assured that participation was

confidential, and voluntary, and was not a patient charge. This project

received the approval of Hon. Maurice Giunta, President, Friends of

Ronald McDonald House, Inc.; Dr. Ian Burr, Chairman, Department of

Pediatrics, University of Florida College of Medicine; Jodi Mansfield,

Shands Hospital Vice-President of Operations; Jerald Mitchell, Shands

Hospital Director of Ancillary Services; and Susan Fort, Director,

Shands Hospital Department of Social Work Services. One hundred fifty

children's physicians at Shands Hospital were also notified of the

project.

Treatment Variables and Instruments

This study had one independent treatment variable with two levels:

(a) control which involved no treatment and (b) experimental which was

the self-management booklet. The treatment consisted of receiving and

using Mothers Know Best, a self-management booklet, for 7 days. The

booklet was designed to help mothers cope by structuring their current

coping strategies. The booklet guided mothers to organize and ask the

questions they had about their child's illness (increase information),

to take actions to preserve their own well-being (preserve health), and

to take the initiative to meet other parents at the Ronald McDonald

House (increase social support).

A booklet format was chosen as the form of intervention because of
the convenience of use, its cost-effectiveness, and its potential to be












disseminated and used in the other Ronald McDonald Houses. The booklet

distributed to the experimental group was written by the present

investigator as part of this doctoral research project. It incorporated

10 years of counseling experience with the population being studied and

7 years of association with Ronald McDonald Houses in several major

capacities. The booklet was based on the observation that even highly

educated mothers report that they often become disorganized, isolated,

and stressed when their child is seriously ill. The booklet was

designed to be a structured, self-directed process that assists mothers

in organizing coping efforts.

The reading level of the booklet is approximately seventh to eighth

grade as assigned by the McLaughlin SMOG Vocabulary Test which predicts

grade level difficulty of a passage within 1.5 grades in 68% of the

passages tested (Doak, Doak, & Root, 1985). According to Pichert and

Elam (1985), the SMOG formula is as good as any, and was recommended by

the U.S. Department of Health and Human Services for their 1981 book on

communication with cancer patients. Although the Ronald McDonald House

intervention booklet was intended for women with a minimum of a ninth-

grade education, the reading level was maintained at an approximate

seventh- to eighth-grade level as a result of the Norfolk study of 100

samples of patient education materials wherein even patients who stated

they were high school graduates had, on the average, a seventh-grade
word recognition level (Doak et al., 1985).

After initial development, the first form of the booklet was rated

by a panel of seven experts for appropriateness of format, vocabulary
level, clarity of presentation of ideas, overall design, accuracy of











information presented, and value as a teaching tool for stressed

mothers. The panel consisted of a Ronald McDonald House coordinator, a

professor of counselor education, a professor of clinical psychology, a

pediatric intensive care social worker closely involved with the parents

at the Ronald McDonald House, a pediatrician, a graduate student in

media, and a doctoral-level professional in media production. Raters

were asked to rate each aspect (format, vocabulary, ideas, design,

accuracy, and value) on a 5-point Likert scale (excellent = 5 to poor =

1). The overall mean score for the booklet was 4.1. The booklet was

then piloted with 15 mothers of hospitalized children and given a good

to excellent rating. The final form was then constructed using

suggestions of the panel of experts and mothers (Appendix C).

Dependent Variables

There were four dependent variables in this study thought to

mediate coping: (a) uncertainty about the child's illness, (b) social

support from family, (c) social support from friends, and (d) stress

(strain). In this study the term stress (strain) was used to discuss

the concept of stress. To measure these variables, the subjects were

asked, within approximately 48 hours of admission to the Ronald McDonald

House and again 7 days later, to answer a total of 119 items on four

questionnaires which covered uncertainty about the child's illness,

strain, and social support from family and friends. The questionnaires

assessing uncertainty, social support from family and friends, and

stress (strain) were all used with the permission of their authors.












Uncertainty

The Parent-Child Uncertainty in Illness Scale (PCUS) (Mishel,

1982) was used to measure parents' perceptions of uncertainty concerning

their hospitalized child. This instrument is also called the Parents'

Perception of Uncertainty Scale, but is referred to as the PCUS in this

study. The PCUS is a 31-item, self-report, paper-and-pencil test in

which uncertainty is conceptualized as a syndrome of ambiguity, lack of

clarity, lack of information, and unpredictability. Perceived

uncertainty, a judgment about an event or situation, was identified as

one of the conditions contributing to a stress response in adult

patients (Mishel, 1981). The PCUS was developed by Mishel to measure

this perceptual variable believed to influence parents' responses to

their child's illness and hospitalization.

The PCUS is composed of four subscales (ambiguity, lack of clarity,

lack of information, and unpredictability) plus the total score for the

scale. Respondents are asked to mark items regarding how they are

feeling about their child today, on a 5-point Likert scale of agreement

from strongly agree to strongly disagree. Responses are assigned

numerical equivalents (1-5) and summed to obtain a total score. Scores

on four subscales are derived from answers to four subsets of questions.

Thirteen questions address ambiguity, such as "It is difficult to know
if the treatments or medications my child is getting are helping" and

"It is vague to me how I will manage the care of my child after he/she

leaves the hospital." Nine questions cover lack of clarity, such as

"The explanations they give about my child seem hazy" and "The doctors

and nurses use everyday language so I can understand what they are











saying." Five questions cover lack of information, such as "I don't

know what is wrong with my child" and "My child's treatment is too

complex to figure out." Unpredictability is obtained by adding the

scores on subjects' responses to four items such as "I usually know if

my child will have a good or bad day" and "My child's physical distress

is predictable. I know when it is going to get better or worse."

To assess parents' perception of uncertainty, Mishel (1983) adapted

the Mishel Uncertainty in Illness Scale (MUIS) and administered it to

272 parents of hospitalized children. A large number (n =- 218) were

mothers, probably because data collection occurred during the afternoon

hours. All parents were high school graduates. Following item

analysis, the data were subject to factor analysis. For the total

scale, the standardized alpha was .91. Ambiguity had an alpha of .87,

lack of clarity had an alpha of .81, lack of information had an alpha of

.73, and unpredictability had a standardized alpha of .72. The

reliability of the scale was determined using four estimates of internal

consistency: coefficient alpha, coefficient theta, item subscale, and

subscale-subscale correlations. As this was a new scale, the criterion

level used for coefficient alpha was .70 or above. Coefficient theta

was also used as a reliability estimate because theta provides

reliability coefficients based on factor analysis with the potential for

overcoming the limitations associated with alpha reliability. The

overall findings concerning reliability indicate that the subscales are
internally consistent. Although this was a relatively new tool, the

initial findings indicated that this tool provided a means for

evaluating the perception of uncertainty in one person concerning a

significant other.












Social Support

The Perceived Social Support from Family (PSS-Fa) and Perceived

Support from Friends (PSS-Fa) scales, by Procidano and Heller (1983),

were used as measures of social support. Perceived social support

refers to the impact networks have on the individual and can be defined

as the extent to which an individual believes that his/her needs for

support, information, and feedback are fulfilled (Procidano & Heller,

1983). Each 20-item scale in the PSS-Fa and the PSS-Fr consists of

statements to which the individual answers "yes," "no," or "don't know."

The response indicative of perceived support is a +1. The scores are

the sum of the responses and range from 1-20. "I rely on my family for

emotional support" and "My friends are good at helping me solve

problems" are examples from the scales. Measures of perceived social

support from family (PSS-Fa) and from friends (PSS-Fr) were developed

and validated using a population of over 200 students. The PSS-Fr and

PSS-Fa proved to be homogeneous measures with Cronbach's alpha

coefficients of .88 and .90. Construct validity was shown using the

same sample and the authors report that both PSS-Fa and PSS-Fr were

negatively related to symptoms as measured by the Langner screening

instrument. The PSS-Fr was positively related to social assets as

measured by the California Psychological Inventory and the Dating and

Assertion Questionnaire. The PSS-Fr was found to be negatively related

to psychopathology as measured by the psychasthenia and schizophrenia

scales of the short form Minnesota Multiphasic Personality Inventory
(MMPI), while the PSS-Fa was negatively related to depression,

psychasthenia, and schizophrenia scales (Procidano & Heller, 1983).












Stress (Strain)

Stress was measured by use of the Strain Questionnaire (SQ)

(Lefebvre & Sandford, 1985). The development of the SQ was guided by

the conceptualization of stress (strain) as a syndrome of physical,

behavioral, and cognitive symptoms that are elicited, to varying

degrees, by environmental demands upon the individual. The stress

syndrome is relatively independent of concomitant emotional states

(e.g., anxiety, depression), and is not severe or chronic enough to have
resulted in clinical diagnosis. The respondent for this 48-item,

self-report, paper-and-pencil test is asked to rate how many times in

the last week they experienced each of the 48 physical, cognitive, and

behavioral symptoms on a frequency scale of never to every day.

Responses are assigned numerical values of 1-5 and are summed for each

of the three subscales and then totaled for an overall strain score.

The higher the score, the greater the level of strain.

Physical signs of strain, such as pain in heart or chest and

headaches, are addressed by 28 questions. Behavioral symptoms, such as

impulsive behavior and inability to sit still, are covered by 12

questions. Cognitive symptoms, such as believing the world is against

you and feeling out of control, are assessed by 8 questions. LeFebvre

and Sandford (1985) have reported initial reliability and validity
studies on the SQ based on a total of 412 subjects including
undergraduate and graduate students, teachers, engineers, and insurance

agents of both sexes. Alpha coefficients were reported to be .71 for

the behavioral subscale, .86 for the the cognitive subscale, and .92 for

the physical subscale. The full scale had an alpha coefficient of .94.












Reliability tests included internal consistency and test-retest over a

period of 1 month. Test-retest reliabilities were .73 for the cognitive

subscale, .75 for the physical subscale, and .77 for the behavioral

subscale.

Using a sample of 48 business students, Lefebvre and Sandford

(1985) established concurrent validity. Correlations between the SQ,

its three subscales, and the Beck Depression Inventory (BDI) were

significant ranging from .63 to .78. These data indicate a moderate

degree of shared variance by the two instruments which is primarily

attributable to the overlap of cognitive symptoms. Discriminant

validity was determined by comparing subgroups of the sample who were

under stress with subgroups who were not when they completed the SQ.

The nonstressed group scored significantly lower than the other

subgroups for the SQ and the cognitive and behavioral subscales. On the

physical subscale, one of the stressed groups and the nonstressed group

scored lower than the other three stressed groups. Behavioral subscale

items present the most inconsistent findings of these studies, as

behaviors such as prescription drug use may be due to the presence of a

chronic medical condition rather than a result of stress. While it was

being researched, the SQ was one of the few brief, self-report

instruments available to measure stress which had empirical evidence of

being reliable and valid. Lefebvre and Sandford encourage the use of

the SQ in clinical settings to identify specific stress symptoms and

suggest intervention strategies.











Research Hypotheses

The researcher posed the following null hypotheses:

1. There is no significant difference in levels of uncertainty,

after a 7-day stay, between mothers at the Ronald McDonald House who

receive a self-management booklet and those who do not.

2. There is no significant difference in levels of social support

from family, after a 7-day stay, between mothers at the Ronald McDonald

House who receive a self-management booklet and those who do not.

3. There is no significant difference in levels of social support

from friends, after a 7-day stay, between mothers at the Ronald McDonald

House who receive a self-management booklet and those who do not.

4. There is no significant difference in levels of stress

(strain), after a 7-day stay, between mothers at the Ronald McDonald

House who receive a self-management booklet and those who do not.

Data Analyses

Descriptive statistics were used to describe the sample on each of

the demographic variables. All four research questions and hypotheses

were answered utilizing an analysis of covariance. The pretest scores

on each dependent measure were utilized as a covariate in order to

adjust the posttest scores for any variation between the two groups
prior to treatment. The adjusted posttest scores for the experimental

group were then compared with the scores of the control group to
determine if they were significantly different (2<.05). In all cases

the analysis of covariance model was shown to be significant (P<.0001)

and the linear relationship between the pretest and posttest scores was










72
also shown to be significant (p<.0001). A t test was utilized for

comparison of the two groups.















CHAPTER IV
RESULTS

The purpose of this study was to explore the effect of a

self-management intervention on levels of uncertainty, perceived social

support, and stress in mothers of hospitalized children while the

mothers were registered at the Gainesville, Florida, Ronald McDonald

House. The research sample, the results of the analysis of covariance

used to test the hypotheses that the intervention booklet will lower

uncertainty and stress and increase social support from family and

friends, and a summary of the results are described in this chapter.

Description of the Sample

Every eligible parent approached for this study agreed to

participate and 15,307 items of information were collected from 59

mothers. Summarized in Table 4-1 are the means, standard deviations,

and ranges of scores on the four dependent variables for the total

sample.

From pretest to posttest (1 week) the mean scores for the total

sample decreased for uncertainty from 87.66 to 84.49 and decreased for

strain from 91.24 to 84.71. In contrast, mean social support from
family and social support from friends increased during that same period

from 14.71 to 14.88 and 13.80 to 14.36, respectively. None of these

changes were statistically significant.

















Table 4-1
Pretest and Posttest Means, Standard Deviations, and
Ranges of Scores for Dependent Variables
for Total Population


Variable Mean SD Range

Uncertainty

Pretest 87.66 15.33 86.00
Posttest 84.49 14.89 74.00

Social Support, Family

Pretest 14.71 5.30 19.00
Posttest 14.88 5.89 20.00

Social Support, Friends

Pretest 13.80 4.94 19.00
Posttest 14.36 5.16 18.00

Stress

Pretest 91.24 27.57 110.00
Posttest 84.71 28.51 103.00












Testing the Null Hypothesis

In this study four null hypotheses were proposed which examined the

effects of a self-management intervention on (a) uncertainty, (b) social

support from family, (c) social support from friends, and (d) strain of

mothers of hospitalized children. An analysis of covariance was used to

compare the adjusted posttest means of the control and treatment groups

for the four dependent variables and their subscales (Huck, 1974).

Uncertainty

Hypothesis 1--There is no significant difference in levels of

uncertainty, after a 7-day stay, between mothers at the Ronald McDonald

House who receive a self-management booklet and those who do not.

To test the effect of the intervention booklet Mothers Know Best on

uncertainty, an analysis of covariance was performed on the dependent

variable uncertainty, using the pretest of uncertainty as a covariate.

The means and standard deviations of each group's uncertainty scores are

shown in Table 4-2. The source table of this analysis of uncertainty,

and of separate analyses for each subscale (ambiguity, lack of clarity,

lack of information, and unpredictability), are presented in Table 4-3.

For the total scale of uncertainty, the analysis of covariance was

performed with an obtained F 5.68. and p .0205. Since the F ratio

of 5.68 for uncertainty was significant at the .05 level, this null

hypothesis could be rejected. For the uncertainty subscale of

ambiguity, the analysis of covariance was performed with an obtained F =

6.46 and a 2 < .0001. The F ratio of 6.46 was significant. For the

other three subscales, however--lack of clarity, lack of information,



















Table 4-2
Pretest and Posttest Means and Standard Deviations for
Total Scores and Subscales of Uncertainty


Control Treatment
Variable Mean SD Mean SD

Uncertainty Total

Pretest 85.43 16.50 89.97 13.95
Posttest 85.60 15.53 83.34 14.38

Ambiguity Subscore

Pretest 37.73 8.92 39.45 7.40
Posttest 37.63 9.15 35.31 7.15

Clarity Subscore

Pretest 23.30 5.15 24.31 3.91
Posttest 23.93 4.85 23.45 4.15

Information Subscore

Pretest 11.10 3.10 12.79 3.70
Posttest 10.83 2.48 12.03 3.52

Unpredictability Subscore

Pretest 13.30 2.93 13.41 2.64
Posttest 13.20 2.76 12.55 3.11



















Table 4-3
Source Table for Analysis of Covariance of


Uncertainty


Source df MS F

Group Uncertainty 1 480.98 5.68 .0205

Within 56 84.61
Total 58

Group Ambiguity 1 191.24 6.46 .0001

Within 56 29.64
Total 58

Group Clarity 1 17.73 1.39 .2433

Within 56 12.75
Total 58

Group Information 1 .012 .00 .9547

Within 56 3.72
Total 58

Group Unpredictability 1 7.80 1.58 .2143

Within 56 4.94
Total 58












and unpredictability--the F ratio was not significant. Inspection of

the means revealed that the treatment group had significantly lower

levels of uncertainty and ambiguity than the control group after using

the booklet Mothers Know Best.

Social Support from Family

Hypothesis 2--There is no significant difference in levels of

social support from family, after a 7-day stay, between mothers at the

Ronald McDonald House who receive a self-management booklet and those

who do not.

The hypothesis pertaining to social support from family was also

tested using an analysis of covariance, with the pretest scores on

perceived support as the covariate. The mean levels of the perceived

social support from family are listed in Table 4-4 and the source table

of this analysis is located in Table 4-5.

The analysis of covariance was performed with an obtained F =

.00012 and a p < .9913. Since the F ratio of .00012 was not significant

at the .05 level, there was not a significant difference between the

control and treatment groups, and this null hypothesis could not be

rejected.

In summary, the analysis of covariance indicated that social

support from family did not change significantly with the treatment.

Social Support from Friends

Hypothesis 3--There is no significant difference in levels of

social support from friends, after a 7-day stay, between mothers at the












Table 4-4
Pretest and Posttest Means and Standard Deviations for Scores
on Social Support from Family and Social Support from Friends


Control Treatment
Variable Mean SD Mean SD

Social Support, Family

Pretest 14.77 5.24 14.66 5.47
Posttest 14.93 5.74 14.83 6.14

Social Support, Friends

Pretest 13.57 5.05 14.03 4.91
Posttest 13.20 5.44 15.55 4.64




Table 4-5
Source Table for Analysis of Covariance of Social Support
from Family and Social Support from Friends


Source df MS F R

Social Support Family

Group Social Support, Fa 1 .0007 .00012 .9913

Within 56 6.07
Total 58

Social Support Friends

Group Social Support, Fr 1 60.44 4.34 .0418

Within 56 13.93
Total 58












Ronald McDonald House who receive a self-management booklet and those

who do not.

The hypothesis pertaining to social support from friends was also-

tested using an analysis of covariance with the pretest scores on

perceived support as the covariate. The adjusted means of each group's

perceived level of social support from friends is listed in Table 4-4.

The source table of this analysis is located in Table 4-5.

Examination of the means shows that perception of social support

from friends increased for the treatment group while the control group

level decreased slightly. The analysis of covariance was performed with

an F value 4.34 and a D value = .0418. The F value of 4.34 was

significant at the .05 level. Therefore, this null hypothesis could be

rejected.

In summary, the analysis of covariance and an examination of the

means indicated that the treatment, the Mothers Know Best booklet, had a

beneficial effect on mothers' levels of perceived support from friends.

Stress (Strain)


Hypothesis 4--There is no significant difference in levels of

stress (strain), after a 7-day stay, between mothers at the Ronald

McDonald House who receive a self-management booklet and those who do

not.

To test the effect of the intervention booklet Mothers Know Best on

strain, an analysis of covariance was performed on the dependent

variable, strain, using the pretest of strain as a covariate. The means

of the strain scores are shown in Table 4-6. Results of this analysis












of strain, and its subscales of physical, behavioral, and cognitive

components of strain are presented in Table 4-7.

The computed E value for effect due to strain was .01 with a 2
value of .9334. The physical, behavioral, and cognitive subscales did

not have significant F ratios. Since the F values were not significant

at the .05 level, Hypothesis 4 could not be rejected.

Thus, analysis of covariance for stress indicated that posttest
levels of stress (strain) were not significantly different for the

treatment and control groups.


Summary

To summarize, four hypotheses that were tested using an analysis of

covariance for each of the four dependent variables investigated in this

study were discussed in this chapter. Significant differences between

treatment and control group on adjusted posttest means for both

uncertainty and social support from friends were found, with the levels

of uncertainty significantly lower and the level of social support from

friends significantly higher for the treatment group. Scores on social

support from family and stress (strain) scores were not significantly

different for the two groups. Within the construct of uncertainty,

scores on the subscale ambiguity were also significantly lower for the

treatment group. Thus, the self-management intervention Mothers Know

Best did have a beneficial effect on mothers in the treatment group on

the dimensions of uncertainty and social support from friends, but did

not have a significant effect on social support from family or on stress

(strain).



















Table 4-6
Pretest and Posttest Means and Standard Deviations for
Scores on Stress (Strain) Measures


Control Treatment
Variable Mean SD Mean SD

Stress (Strain)

Pretest 89.80 25.66 92.72 29.80
Posttest 83.80 28.33 85.66 29.16

Physical Subscore

Pretest 51.80 15.59 51.90 19.01
Posttest 48.40 17.00 50.38 19.35

Behavioral Subscore

Pretest 20.47 5.83 22.17 7.42
Posttest 19.93 5.85 20.55 7.53

Cognitive Subscore

Pretest 17.53 8.71 18.66 7.52
Posttest 15.47 7.94 14.72 6.93



















Table 4-7
Source Table for Analysis of Covariance of Stress (Strain)


Source df MS F


Group Stress (Strain) 1 2.58 .01 .9334

Within 56 366.21
Total 58

Group Physical 1 53.62 .32 .5710

Within 56 165.08
Total 58

Group Behavioral 1 8.68 .54 .4662

Within 56 16.12
Total 58

Group Cognitive 1 28.98 .88 .3535

Within 56 33.11
Total 58
















CHAPTER V
DISCUSSION, CONCLUSIONS, AND RECOMMENDATIONS

The purpose of this study was to determine if a self-management
booklet for mothers staying at a Ronald McDonald House had an effect on

the mothers' uncertainty about their child's illness, their social

support from family and friends, and their stress (strain). The use of
the booklet, while staying in the supportive atmosphere of the Ronald

McDonald House, was the method of helping mothers to cope with the
hospitalization of their child.

The booklet was written with the underlying goal of promoting
individual strengths and capabilities of mothers by encouraging them to

take a proactive role in coping with the present hospitalization of
their child. In the booklet the author addressed three coping patterns

that, as shown by previous research, increase mothers' ability to manage

life when a child has a chronic illness: maintaining well-being,

maintaining social support, and understanding the medical situation

(Figley & McCubbin, 1983). Presented in this chapter is a discussion of

the research results and the limitations of the study, conclusions, and
recommendations for future research on both the stress associated with
the hospitalization of a child and on Ronald McDonald Houses.












Discussion

Total Population

For the total study population, the status of the mothers showed a

trend of improvement during the week they stayed in the supportive

environment of the Ronald McDonald House. Their mean scores for

uncertainty decreased from 87.66 to 84.49. Mean scores on social

support from family increased from 14.71 to 14.88 and on social support

from friends increased from 13.80 to 14.36. Stress mean scores

decreased from 91.24 to 84.71. The changes in these scores, for the

total population, were not statistically significant.

Booklet Use

The author wrote a booklet for mothers, bearing in mind that crisis

intervention therapy is involved with solving the immediate problems

facing the client (Aguilera & Messick, 1986). The self-management

booklet given to the treatment group in this study encouraged mothers to

ask questions about the medical problems afflicting their children in

order to decrease maternal uncertainty. Mothers were also encouraged to

take actions to promote their own emotional and physical well-being, and

to make an effort to get to know other mothers at the Ronald McDonald

House to increase their support. In order to help mothers focus global

anxiety, and in order to determine whether they had used the booklet,

mothers were encouraged to write in the booklet in spaces provided for

their answers. Mothers were also asked to use the booklet in any other

way that would be helpful to them. This problem-oriented activity was











instituted to help mothers order their priorities and regain some

balance in, and control over, their lives.

Surprisingly, all but six mothers in the treatment group wrote in.

the booklet, in spite of the fact the booklet was introduced to mothers

during the early adjustment period of their child's hospitalization.

All subjects claimed to have read the booklet. The 23 mothers in the

treatment group who wrote in the booklet entered a mean of 2.91

questions on uncertainty, 2.33 names of people met at the Ronald

McDonald House, and 3.13 actions for reducing their stress. Individual

mothers also used the booklets for recording names of physicians,

telephone numbers, addresses of medical supply stores, visiting hours of

restricted areas of the hospital, reactions to formula changes, times of

medical procedures, suggestions for other mothers, a complaint about

parent/physician communication, and an inspirational verse for parents

of "special" children. Two subjects underlined booklets where the text

acknowledged mothers' concern about their family at home and their

feelings of guilt. One mother expressed gratitude for the booklet and

felt its social support suggestions had been a major factor in her

coping. Another mother admonished the researcher to be sure to return

the booklet to her, as it was to go into a scrapbook.

The six mothers who did not write in the booklet gave the following

reasons: lost booklet, "burnout" after 7 months of hospitals, lack of

interest, depression over a diagnosis of mental retardation, anxiety

over a quadraplegic son, and resistance to reading anything but the
Bible. The ready acceptance of this easily read booklet is consistent

with the success in the Netherlands, where written communications have












gained prominence in working with patients and their families (Visser,

1980).

Uncertainty

The analysis of covariance, and an examination of the means, showed

that there was a significant decrease in the treatment group, compared

with the control group, for the total uncertainty scale. This is most

likely due to the self-management booklet because it had specifically

addressed uncertainty. In Mothers Know Best, mothers were advised to

write in the booklet questions they had about their child's illness so

they would remember to ask them when they saw the doctors.

Within the subscales of uncertainty, there was a significant

decrease in ambiguity. There was not a significant decrease for the

subscales of lack of clarity, lack of information, and unpredictability.

The ambiguity subscale had 6 disease-related and 7 disease- and

communication-related items. Thus, the ambiguity subscale had a total

of 13 items. The clarity subscale had 9 items, lack of information had

5 items, and unpredictability had 4 items. The limited number of

subscale items in the latter three subscales may account for the fact

that the booklet had impact on ambiguity more than on the other

subscales.

Mishel's Parent/Child Uncertainty Scale (Mishel, 1983) is unique in

that one person evaluates the uncertainty experienced concerning another

person (i.e., a mother rates her uncertainty about her child).

According to personal communication with Dr. Mishel, the current study

was the first time the scale had been used as both a pretest and a












posttest. The mean scores for the Gainesville total group pretest were

87.66 and for the posttest were 84.49. Comparing these to the mean

score for the 410 parents on whom the Uncertainty Scale was normed,

which was 78.76, both the Gainesville pretest and posttest means are

significantly greater than Mishel's means (p<.01 and g<.05,

respectively). Information was not available concerning the exact

conditions under which Mishel's mothers were interviewed. The

difference between Mishel's mothers and the Gainesville mothers could

have been due to differences in the severity of the illness of the

children, differences in the timing between hospital admission and test

administration, and differences in education and medical sophistication

of mothers.

Social Support from Family

Analysis of covariance for Procidano and Heller's (1983) Social

Support from Family Scale showed there was no significant difference in

the adjusted posttest scores between the control and the treatment

groups. Perhaps it cannot be expected that intrinsic feelings of family

support would be changed by a booklet over the course of 1 week.

Mothers expressed definite feelings that they either had or did not have

family support, depending on how demanding the mother, and her sick

child, were on the family's resources.

Despite the lack of significant differences in reported perceptions
of social support from family, demographic data collected during the

posttest revealed that the mean score of visits from family for the

control group and treatment group was 3.43 and 5.59, respectively. This












was significant (2 = .0038). The increase in family visitors in the

treatment group could possibly have been an effect of the booklet which

encouraged mothers to have their family visit them at the Ronald

McDonald House. However, any inclination to generalize on family visits

should be tempered by the realization that serious illness places grave

economic restraints on most families. Lack of money for telephone calls

and transportation could also have an effect on perceived family

support.

The control group had a mean of 6.60 calls to family while the

treatment group had a mean of 5.21 calls to family. There is no

statistically significant difference between these numbers.

Although the booklet encouraged mothers to call home, not all mothers

readily use telephones, nor did all mothers wish to maintain contact

with home. Telephone calls home that elicited responses such as "Call

us if he dies," "I hear he's retarded," and "Does a shunt mean my baby

will never play football?", although they came from family, were not

perceived as supportive by the mothers.

It became apparent to the researcher that although the Social

Support from Family instrument is concerned with family support, for the

mothers in this study, at a traumatic time in their lives, the

instrument was inadequate for measuring support from husbands. In

discussions after the posttest, at least a dozen mothers reported having

coalitions with family members other than husbands. Although 50 of the

59 mothers reported that they were married, mothers reported that their

mates ranged from nothing more than a biological contributor to the

conception of a child to being perceived as a mother's closest












companion. Sixteen mothers reported they were closer to their

mothers-in-law, the sick child, or other relatives, than to their

husbands. These data are consistent with Penn's (1983) research about

families of children with chronic illness forming coalitions.

Although husbands could be nurturing and supportive to the women at

the Ronald McDonald House, their presence was not necessarily perceived

as support. They were sometimes viewed as detriments to the coping of

mothers. Mothers stated that husbands could be supportive, loving men

capable of managing the family at home. However, one husband threatened

divorce and another used punishing behavior with his wife, such as

forbidding telephone conversations with the children at home, when the

mother chose to be with the sick child rather than with her husband.

One mother expressed anger when the "prodigal," gift-laden father

appeared at the hospital, after a year's absence, and proceeded to

become the favorite, obeyed parent, while resurfacing all the

pathological behavior that had caused the couple to separate. These

anecdotal data are consistent with the research findings of Moos and Tsu

(1977) that illness exacerbates any ills evident in the family system.

For the mother reunited with her husband when the Red Cross brought

him home on emergency leave from Germany and the mother whose husband

stayed at the Ronald McDonald House and became involved in the care of
their child for the first time in 8 years, the hospitalization of a

child was a positive experience. Consistent with the work of Koocher

and O'Malley (1981), every mother expressed the belief that the illness

of her child had, in some way, changed her marriage or her relationship

with the significant male in her life.




Full Text

PAGE 1

EFFECTS OF A SELF-MANAGEMENT INTERVENTION ON UNCERTAINTY, SUPPORT, AND STRESS IN RONALD MCDONALD HOUSE MOTHERS By NATALIE SETTIMELLI SMALL A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 1987

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Copyright 1987 by Natalie Settimelli Small

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To Joseph and Edmea Settimelli my very special parents Whose gift to future generations has been a tradition of love-Love of family, love of nature, and love of learning.

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ACKNOWLEDGMENTS I wish to acknowledge the following people who have enriched my education and life. Dr. Margaret Fong-Beyette, my committee chairperson, your positive attitude enabled me to cope with the vagaries of clinical research, while you reflected the professionalism of a dedicated woman in academia. Dr. Ellen Amatea and Dr. Barbara Melamed, your encouragement started me on the path towards a doctoral degree. Dr. Jane Myers and Dr. Hannelore Wass, my committee members, your gentle prodding and warm enthusiasm kept me moving on that path. The members of the Department of Pediatrics of the University of Florida College of Medicine and the members of the Department of Social Work Services of Shands Hospital, your support for making hospitalization a more humanizing experience for pediatric families enabled me to undertake this study. My associates on the Board of Directors of the Ronald McDonald House, I thank you for your dedication and for acknowledging the importance of measuring the "magic" that occurs at the Ronald McDonald House. Ben Stevens, Dianne Downing, and Barney Aim, without your technical assistance and kindness this study would have been exceedingly difficult to accomplish. iv

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1 Lucy Braun, Irish Cluff-Hallmark, and Georgie Ellis, your notes, flowers, and balloons verified the importance of social support from friends. My father and brother, you encouraged excellence; and my mother, at 83, you continue to role-model the best in mothering behavior: love, optimism, nurturance, and forbearance. My children, Parker, Peter, and Carl a, as unique personalities and subjects in my parenting laboratory, you have managed to emerge as caring, capable, and sensitive adults. My dear friends, Katie and Vicky Small, your encouragement and support have endeared you to me. My husband Parker, your understanding, limitless patience, and loving friendship have made my education meaningful, my parenting satisfying, and my marriage fun. I feel a special debt of gratitude to the hundreds of mothers of seriously ill children, especially those in my current study, whom I have counseled. They have shown me a concept of truth that runs in literature from the time of the Greeks: that the human personality is most resilient when it is under extreme pressure. They have also taught me that when all options appear to be spent, there is a strength that binds a mother and a sick child that transcends medical knowledge and is a source of human survival. V

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TABLE OF CONTENTS PAGE ACKNOWLEDGMENTS iv LIST OF TABLES viii ABSTRACT ix CHAPTERS I INTRODUCTION 1 Statement of the Problem 10 Purpose of the Study , [ 13 Research Questions 13 Importance of the Study 14 Definition of Terms 15 Organization of the Study 17 II REVIEW OF THE LITERATURE 18 Crisis Intervention Theory and Illness 18 Impact of a Child's Hospitalization on Mothers 24 Dealing with Pain and Incapacitation 27 Dealing with the Hospital Environment and Special Treatment Procedures 28 Developing Adequate Relationships with the Professional Staff 28 Preserving a Reasonable Emotional Balance...!!!!!!!!!! 28 Preserving a Satisfactory Self-image 29 Preserving Relationships with Family and Friends 30 Preparing for an Uncertain Future 32 Coping and Mothers [[ 33 Uncertai nty !!!!!!!!!!!!!!! 36 soci ai Support !!!!!!!! 39 Stress (Strain) !!!!!!!!!!!!!!!!!!! 44 Counseling Interventions !!!!!!!!!!!!!!! 48 Ronald McDonald Houses as Therapeutic Milieus!!!!!!! 50 Summary 53 vi

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Ill METHODOLOGY 55 Design of the Study 55 Population and Sample 57 Procedures 59 Control Group 59 Experimental Group 62 Treatment Variables and Instruments 63 Dependent Variables 65 Uncertainty 66 Social Support 68 Stress (Strain) 69 Research Hypotheses 71 Data Analyses 71 IV RESULTS 73 Description of the Sample 73 Testing the Null Hypothesis 75 Uncertainty 75 Social Support from Family 78 Social Support from Friends 78 Stress (Strain) 80 Summary 81 V DISCUSSION, CONCLUSIONS, AND RECOMMENDATIONS 84 Discussion 85 Total Population 85 Booklet Use 85 Uncertainty ] 87 Social Support from Family 88 Social Support from Friends 91 Stress (Strain) 92 Limitations 94 Conclusions 95 Recommendations 95 Future Research 97 APPENDICES A 1985 RONALD MCDONALD HOUSE SURVEY 99 B DEMOGRAPHIC DATA IO4 C INTERVENTION AND EVALUATION 107 D INSTRUMENTS 115

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LIST OF TABLES TABLE PAGE 31 Summary Statistics of the Mothers' Characteristics 60 41 Pretest and Posttest Means, Standard Deviations, and Ranges of Scores for Dependent Variables for Total Population 74 4-2 Pretest and Posttest Means and Standard Deviations for Total Scores and Subscales of Uncertainty 76 4-3 Source Table for Analysis of Covariance of Uncertainty... 77 4-4 Pretest and Posttest Means and Standard Deviations for Scores on Social Support from Family and Social Support from Friends 79 4-5 Source Table for Analysis of Covariance of Social Support from Family and Social Support from Friends 79 4-6 Pretest and Posttest Means and Standard Deviations for Scores on Stress (Strain) Measures 82 4-7 Source Table for Analysis of Covariance of Stress (Strain) 83 viii

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Abstract of Dissertation Presented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy EFFECTS OF A SELF -MANAGEMENT INTERVENTION ON UNCERTAINTY, SUPPORT, AND STRESS IN RONALD MCDONALD HOUSE MOTHERS By Natalie Settimelli Small August 1987 Chairperson: Margaret L. Fong Major Department: Counselor Education The purpose of this study was to determine the effects of a self -management booklet on mothers who were registered at the Gainesville, Florida, Ronald McDonald House. Ronald McDonald Houses, a recent advancement, provide a home -awayfromhome for families with a hospitalized child. Research has demonstrated that mothers who successfully cope with a sick child typically adopt three behaviors: they learn the medical situation through communication with medical staff and other mothers (i.e., cope with uncertainty), they establish a social network (i.e., maintain social support), and they adopt a positive outlook (i.e., cope with stress). The booklet Mothers Know Best was developed by the author ix

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to educate mothers about these coping behaviors. Its purposes were to encourage mothers to adopt a proactive role in asking questions of the medical staff to reduce uncertainty, to take actions to promote their own well-being, and to interact with other mothers at the Ronald McDonald House. This study determined the impact of the booklet Mothers Know Best on decreasing uncertainty and stress and on increasing social support from family and friends. The four instruments used in this study were Mishel's Parent/Child Uncertainty Scale, Lefebvre and Sandford's Strain Questionnaire, and Procidano and Heller's Social Support from Family and Social Support from Friends Scales. The instruments were administered as pretests and 1 week later as posttests to 59 mothers. Following the administration of the pretest to the 29 treatment group mothers, they were given the booklet and asked to read it and use it. Analyses of covariance revealed that the treatment group mothers who used the booklet Mothers Know Best had significantly lower uncertainty concerning their child's disease and higher levels of perceived social support from friends than the control group. The booklet did not have a significant effect on the mothers' perceptions of social support from family or their stress. Because the booklet proved to be beneficial to the mothers in this study, it was recommended that it be used in the Ronald McDonald Houses and further tested in other, comparable facilities. X

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CHAPTER I INTRODUCTION If you can't have Christmas at home, the next best thing is the Ronald McDonald House. I love being home this year, but I'm frustrated because I don't have people to talk to. People with healthy children just don't understand. (A Christmas note from a mother who stayed at a Ronald McDonald House for 13 months) Hospitalization of seriously ill children has a profound effect on mothers. Emotional contagion between a mother and child, as well as personal and family problems that often arise simultaneously with the medical problem, may result in maladaptive coping behaviors. When hospitalization means that a mother and child are far from home and all that is familiar, negative effects from hospitalization can be exacerbated. To help this segment of the population—parents and children in hospitals far from home--100 Ronald McDonald Houses have been built and another 50 are in the planning stages (Jones, 1986). These houses are safe, comfortable, and inexpensive. They are "a home away from home" for families going through a medical crisis. Based on crisis intervention theory, the question arises as to whether emotional support can be enhanced in these Ronald McDonald Houses? The high degree of maternal stress associated with children's hospitalization is of concern to counselors and researchers not only because maternal stress can be transmitted to children and contribute to 1

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2 the distress of the pediatric patient, but also because of the effect on the mothers themselves (Shaw & Routh, 1982). The magnitude of this problem is indicated by the quantity of hospital admissions of children. Each year in the United States, more than 5 million children are admitted to hospitals for diagnosis or treatment. According to the 1986 annual report of the National Center for Health Statistics, in 1984, there were over 14 million patient days for children under the age of 15 in short-stay (less than 30-day) hospitals. A review of the relevant literature reveals that hospitalization, or other health care experience, results in at least transitory changes in family behavior, in the subjective assessments of family members, and possibly in physiological indicators frequently associated with upset (Thompson, 1986). A child's encounter with a health care setting also often involves stress caused by separation from what is familiar; painful experiences, such as injections; and the need to cooperate with various procedures (Melamed & Bush, 1985). Mattsson and Weisberg (1970) found children's behavior during an illness treated at home to be unrelated to previous experience of maternal separation. However, children who had limited experience with normal separation (e.g., being left with a sitter or visiting away from home overnight) experienced more anxiety in the hospital than those with separation experience (Dearden, 1970). Children respond differently to illness and hospitalization depending on their age, developmental level, and disease entity. At least some portion of a child's reaction can be attributed to the aversive properties of the setting itself (Traughber & Cataldo, 1982). In addition, hospitalized children, regardless of their age.

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often feel abandoned by their parents, thus intensifying their anxiety (Astin, 1977; Menke, 1981). As a result of the responses in their children, mothers may exhibit anger, fear, and guilt. Lack of understanding can hamper both mothers' and children's coping ability and promote maladaptive coping behavior. When maternal anxieties concerning treatments and medications are communicated to the child, there can also be serious impact on the child's illness (Langford, 1961; Rae, 1981; Skipper & Leonard, 1968). The emotional contagion of a parent's inability to cope can coincide with a child's inability to understand and accept illness (Barnes, Kenny, Call, & Reinhart, 1972). Insight into emotional contagion in mother-child interaction has been gained from recent studies of the relationship between mothers' style of interaction or discipline with their children and children's responses to treatment in medical or dental settings (Thompson, 1 986) Children exhibited more active exploration of the medical situation when calm mothers provided their children with information and distraction rather than reassurance. Maternal reassurance of children and overt maternal agitation were associated with maladaptive child responses (Bush, Melamed, Sheras, & Greenbaum, 1986). As hospital visitation and rooming-in policies become more liberal, mothers of hospitalized children face new conflicts. Some mothers, for whom hospitals are an aversive stimulus, try to avoid visiting their children. Robinson (1968) concluded that fearful mothers do not take advantage of hospital opportunities to be with their children, and Astin (1977) found that stressed parents may subconsciously withdraw from

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their children. Anxious mothers who do not visit their hospitalized child may miss opportunities for gathering information about their child's illness, which may then intensify anxiety (Alexander, White, & Powell, 1986). In their research, Petri llo and Sanger (1980) found that it may be advantageous for parents to be nearby, but not at, the sick child's bedside. Confirming the beneficial effect of parents being close to their hospitalized child, Oremland and Oremland (1973) concluded that parents should be encouraged to remain nearby, but to leave their child periodically so that the child develops trust in parents and staff and learns that the parents approve of hospital routines and the staff. While researchers have revealed the importance of parents remaining close to their hospitalized child to reduce the child's anxiety, problems associated with parental anxiety continue to surface. Maternal stress and maladaptive coping may be intensified when a child has a chronic illness, such as cancer or cystic fibrosis, that requires multiple or extended hospitalizations. Long-range hospitalization of a child, with its resultant separation, has a stressful effect on every member of the family (Ack, 1983). While different coping strategies may be appropriate for different individuals, the method chosen by each family member influences the adjustment of all others, and particularly difficult problems may be caused by highly discrepant coping among family members (Melamed & Bush, 1985). For the mother of a hospitalized child, there is a cluster of concerns that have to do with the seriousness of the problem, the physical burdens of the illness (such as special diets or protocols), and the financial strain attached to

PAGE 15

hospitalization. The mother must often cope with her uncertainty about outcome; try to mitigate the child's fears, pain, and discomforts; juggle her own expectations and past experiences; and maintain continuing familial, occupational, marital, and personal role behaviors. Although use of psychological preparation of children for hospital procedures has become commonplace, the assumption that all preparation is "good" has been questioned by research (Melamed, Robbins, Small, Fernandez, & Graves, 1980). Cognitive level, age of the child, and previous hospital experience play a role in the child's adaptation to hospitalization and have an effect on the behavior of the mother of the hospitalized child. Personal and family problems during the hospitalization of a child can intensify the stress of mothers. Mothers undergoing the anxiety associated with a catastrophic illness are often enmeshed in the role conflicts associated with being a wife, daughter, employee, mother of a hospitalized child, and mother of well siblings (Chan & Leff, 1982). Dependent, submissive mothers may suddenly find themselves in a strange, dual role of mother/father for extended periods of time. Kubistant (1981) maintained that the loneliness of separation from a primary relationship can be actually physically painful for wives and husbands. For divorced mothers, obligatory decision making with an ex-spouse concerning the sick child may force continuation of a relationship that would have ceased (Ahrons, 1981). Loneliness and isolation are themes found throughout the literature on mothers and the hospitalization of children. A mother who is isolated from contacts with family and friends may find it easy to deny

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the reality of her child's fatal illness. Far from home, a mother may refuse to acknowledge that a child has a serious illness and delay getting the help needed to carry on a normal lifestyle (Halligan, 1983). Depression, overeating, smoking, and drinking--behaviors that may be self-managed at home--can become a problem in the isolation of the hospital environment (McBrian, 1981). Lonely mothers were found to have lowered self-esteem, to be sensitive to rejection, and to be anxious making decisions (Booth, 1983) The press of past events also determines how a mother responds to the present crisis of a child's illness and the regression, withdrawal, and displacement defense mechanisms she may employ. These defense mechanisms, in turn, can alter mothers' perceptions of their situation (Adams, 1979). When a mother finds herself watching her child face death, a sense of tragic absurdity prevails. Not only is time shortened, but its order is shattered as a mother realizes that her child has not had time to begin to form life goals (Sourkas, 1982). Finally, one of the greatest problems in maternal adaptation occurs with the single parent who often lacks emotional support from a partner, has socioeconomic problems, and depends on the seriously ill child for emotional support (Adams, 1984). Although they can play an important role in children's hospitalization, until recently, fathers have been neglected in research. Freudian theory, with its emphasis on the mother-child relationship, has guided research on the parents of hospitalized children. Research on the effect of separation on the hospitalized child is rooted in the mother-child tradition and, therefore, almost

PAGE 17

universally attributes the negative responses of children to separation from mother rather than other attachment figures. As hospitals have increasingly encouraged parent participation in the care of sick children, a greater number of mothers than fathers have involved themselves in their child's care, thus reflecting American society's traditional view of parenting (Thompson, 1985). Breaking from the tradition of mother-child research, Azarnoff, Bourque, Green, and Rakow (1975) studied fathers' anxiety concerning the hospitalized child, but found difficulty in getting father participation in hospital -based research. Roskies, Mongeon, and Gagnon-Lebebvre (1978) determined that the level of father participation with a sick child can be increased through an intervention targeted for mothers. Lord and Schowalter (1982) have reported increased participation by fathers with hospitalized adolescents in recent years. However, in 1985, more than one-fourth of American families with children and more than 60% of those who are black were headed by a single parent. According to the United States Census Bureau (1986), the overwhelming majority of the 8.8 million single-parent families are headed by women. These statistics are influenced by the current trend of unmarried women choosing to keep their babies and the increase in the divorce rate in the United States ("One-parent Families," 1986). It can be anticipated, therefore, that mothers will continue to be the chief caretakers of children when they are hospitalized and will continue to need assistance with their coping skills. Health professionals who have seen the beneficial effects of the Ronald McDonald House concept are advocating that use of community

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services, like Ronald McDonald Houses, should be seen by health care providers as an integral part of family support (Alexander et al., 1986). By initiating environmental support, the McDonald Corporation established the first, large American corporate effort to address the needs of families with a hospitalized child. Ronald McDonald Houses were founded to provide parents of hospitalized children with a homelike atmosphere close to the hospital. Parents whose children are receiving daily outpatient treatments in the hospital, such as chemotherapy and radiation therapy, may stay at the houses with their children. Also, in an effort to maintain family solidarity during the hospitalization of a child, parents may bring siblings for weekend stays at the houses. The first Ronald McDonald Houses opened in Philadelphia in 1974. Since then, 100 houses have opened, including 10 in Canada, 2 in Australia, and 1 each in Germany and the Netherlands. Seventeen houses opened in 1985 and of the 100 houses, none has closed. Attesting to the success of the Ronald McDonald Houses is the fact that more than a million families have chosen to stay at them (Jones, 1986). Gainesville, Florida, a university town with a population of about 100,000 people, has 155 pediatric beds in its 450-bed, tertiary care, Shands Hospital at the University of Florida. As of July 1987, approximately 4,500 families have been housed in the 28-bedroom Gainesville Ronald McDonald House (F. Armes, personal communication). The study by Small (1985b) of 340 families who stayed in the Gainesville house revealed that 15% of the respondents viewed the Ronald McDonald House as a motel-like facility, whereas 48% viewed it as a place to garner social support. Social support has been established as an

PAGE 19

essential element in the management of crisis situations (McCubbin & Figley, 1983). Therefore, it can be suggested that the Ronald McDonald House is providing social support to families, and thus, helps reduce the crisis experience of parents. From a theoretical framework, crisis intervention theory and social support theory provide a paradigm, or structure, for the development of further research on mothers of hospitalized children (McCubbin & Figley, 1983). Proponents of crisis theory maintain that whenever stressful events which threaten biological, psychological, or social integrity occur in a person's life, disequilibrium occurs to some degree along with the possibility of a crisis (Aguilera & Messick, 1986; Melamed & Bush, 1985). In crisis, a person may be confronted with many stressful events occurring simultaneously. The person may be filled with uncertainty and not know what has occurred, let alone which event requires priority in problem solving (Aguilera & Messick, 1986). In his study of the crisis experience, Davis (1963) maintained that a central emotional theme of families indicating a need for intervention was the feeling that the family was no longer "like everyone else." The shift in the family's self-image, from a group more or less like other families with a "normal" quota of satisfactions and troubles, to one that had been "singled out" for misfortune constituted one of the most alienating features of the crisis experience. Moos and Tsu (1977) proposed that illness in a family constellation constitutes a life crisis that exacerbates any ills evident in the family system. The cognitive operations and coping skills of a family will determine whether, when challenged by illness, the family members

PAGE 20

10 adopt adaptive or nonadaptive behaviors in dealing with the stress of illness. Consequently, for the mother of the hospitalized child, the counselor who wishes to enhance coping skills may introduce an intervention that encourages mothers to take a proactive role in solving problems associated with the stress or strain of illness. When a child is hospitalized, it is a time of crisis which calls for coping by the entire family, but especially by the mother. Ronald McDonald Houses are now available so that mothers can remain close to their hospitalized children and families need not be totally disrupted during a child's serious illness. However, the question arises as to whether the coping of mothers at the Ronald McDonald House can be enhanced. Statement of the Problem In determining whether the coping of mothers at the Ronald McDonald House can be enhanced, it is of interest to examine the known means by which mothers of sick children cope. They cope by understanding the medical situation through communication with medical staff and with other mothers (coping with uncertainty), by maintaining a positive outlook (coping with stress), and by maintaining social support (Figley & McCubbin, 1983). As reported in research studies on stress by Figley and McCubbin (1983) on over 500 families with children with chronic illness, three coping patterns, made up of coping behaviors, were identified that parents use to manage family life. Maintaining a positive outlook on life, maintaining social support and self-esteem, and understanding the

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11 medical situation through communication with other parents are means by which mothers of sick children retain their focus on family life. Mothers' coping is directed at the maintenance of the family integration, cooperation, and optimism; at the maintaining of social support, esteem, and emotional stability; and at understanding the medical aspects of the illness (Figley & McCubbin, 1983). Family crisis theory can provide a base for counseling interventions when a child is hospitalized. From such a crisis framework, then, and keeping in mind the coping mechanisms which Figley and McCubbin (1983) report in families with chronic illness, it can be speculated that coping needs of a mother are related to cognitively dealing with her uncertainty about her child's health, to management of her own levels of stress, and to utilization of social support networks. Research has been done on several interventions that have sought to increase mothers' coping with hospitalized children. Although anxiety can be intensified by the hospital system itself, current trends in hospital practice (Roskies et al., 1978), as well as in psychological, stress-point preparation for elective surgery (Wolfer & Visintainer, 1975), place increased emphasis on the role of mothers to alleviate stress in hospitalized children. In the case of the child who requires hospitalization, a mother may have varying degrees of involvement ranging from delivering and retrieving the child to being an intrinsic part of the child's care team with detailed instruction in the child's medical protocol or surgical procedure. Coping may be even more difficult for the conscientious mother with a sick or handicapped child. Pressure may be heightened for her to cope well, because of her

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12 knowledge of research which shows that parent-child interaction, education, and preparation for hospitalization results in a less anxious child (Gross, Stern, Levin, Dale, & Wojnilower, 1983; Kaplan, Smith, Grobstein, & Fischman, 1976). Didactic instruction, filmed modeling, support groups, skill-building groups, media instruction, and booklets have been used with mothers and children to reduce stress and have been found to be generally beneficial (Meng & Zastowsky, 1982; Skipper, Leonard, & Rhymes, 1968; Thompson, 1985; Visser, 1980). However, much maternal anxiety around hospitalization is attributable to the "space" between health care workers' understanding of parents' experience and parents' own comprehension (Hayes & Knox, 1984). Often, hospital personnel are unaware of the uncertainty and stress that fills a mother when her child is an emergency admission (Rogers et al.,1984). It becomes obvious, therefore, that interventions that help mothers to strengthen their adaptive behavior should help them cope with the stress associated with hospitalization of their children. The Ronald McDonald House intends to provide physical and emotional support to mothers (Small, 1985b). The Ronald McDonald House is a major new approach but nobody has produced materials to increase Ronald McDonald House effectiveness. In spite of the number and variety of coping interventions available, no published research has revealed use of a self-management booklet in the therapeutic milieu of the Ronald McDonald House as an intervention to enhance mothers' coping. It should be useful to combine a self -management booklet and the Ronald McDonald House to help mothers who have a hospitalized child.

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13 A self -management booklet was written that adapts the methods of Anthony and Carkhuff (1976) for Ronald McDonald House families. Anthony and Carkhuff translated knowledge about human relations skills into a systematic training program for health professionals through structured written exercises. In the self -management booklet, Anthony and Carkhuff's goals of caring, communication, and comprehension are incorporated to address the uncertainty, social support, and stress of mothers while they are at the Ronald McDonald House. Purpose of the Study The purpose of this study was to determine the effect of a self -management booklet on the coping of mothers who had a hospitalized child and were staying at a Ronald McDonald House. The study was designed to determine the impact of a self -management booklet on decreasing uncertainty and stress (strain), and increasing social support from family and friends. Research Questions This author addressed the effect of a self -management booklet on mothers' perceptions of uncertainty, social support, and stress (strain). Specific research questions were as follows: 1. Is there a difference in levels of uncertainty, after a 7-day stay, between mothers at the Ronald McDonald House who receive a self -management booklet and those who do not? 2. Is there a difference in levels of perceived support from family, after a 7-day stay, between mothers at the Ronald McDonald House who receive a self -management booklet and those who do not?

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14 3. Is there a difference in levels of perceived support from friends, after a 7-day stay, between mothers at the Ronald McDonald House who receive a self -management booklet and those who do not? 4. Is there a difference in levels of stress (strain), after a 7-day stay, between mothers at the Ronald McDonald House who receive a self -management booklet and those who do not? Importance of the Study Mothers who stay at the Ronald McDonald House have children with problems that range from requiring relatively simple, nonthreatening, noninvasive diagnostic procedures to children with terminal illness who will die during the current admission. Crisis intervention theorists such as Lindeman (1944) and social support theorists such as Lazarus and Folkman (1984), have maintained that individuals undergoing personal upheaval experience changes in their social support, tolerance for stress, and ability to cope with uncertainty. Mothers of hospitalized children confirm that contention. A self -management booklet that addresses uncertainty, social support from family and friends, and stress (strain) among mothers at the Gainesville Ronald McDonald House could have several implications. Knowledge about the parents 'levels of uncertainty, reaction to stress, and social support could help health care providers (counselors, psychologists, social workers, nurses, and physicians) institute guidelines for educating and nurturing mothers of hospitalized children. With a clearer picture of what the hospital experience is for mothers, health care providers may teach the mother of the hospitalized child how to be more assertive in getting answers to

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medical questions surrounding the child; how to recognize the behavioral, cognitive, and physical responses illness of their child provokes in themselves; and how to find, promote, and utilize a social support system. Also, with poor doctor-patient communication as the single most common cause of malpractice suits (Starr, 1982), this study may, in a broader sense, assist in the delivery of health care in a new age of medical cost containment, when economics is determining length of hospital stay and supportive services following hospital discharge (Freymann, 1986). Children are, and will continue to be, discharged from hospitals "quicker and sicker" and the demands made on the famili of patients will intensify. In addition, a self -management booklet could be disseminated to all Ronald McDonald Houses at a relatively la cost. Also, the study has implications for the further use of crisis intervention and social support theory as it relates to the Ronald McDonald Houses. Finally, the study has implications for further research. Definition of Terms A number of terms are used throughout this research and deserve further elaboration and definition. Mother--The natural, adoptive, or foster female caretaker with legal custody of a hospitalized child. Pediatric-Medical services treating diseases of children from birth to 21 years of age. These include the divisions of gastroenterology, neonatology, genetics, pulmonology, infectious

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disease, general pediatrics, cardiology, hematology/oncology, nephrology, neurology, endocrinology, surgery, and psychiatry. Pediatric patient --A person of either sex, under the age of 21, and single. These people and their families are entitled to use a Ronald McDonald House facility. Perceived social support --The extent to which an individual believes that his/her needs for support, information, and feedback are fulfilled. Ronald McDonald House -An inexpensive, convenient, comfortable hostelry for parents of hospitalized children. Built with corporate and local funding, governed by a board of directors, and maintained by a house manager, more than 100 Ronald McDonald Houses provide 1,300 bedrooms a night for families in crisis (Jones, 1986). Self -management booklet -A booklet, written by the researcher and judged appropriate by a panel of educational, counseling, and media experts, that encourages mothers staying at the Ronald McDonald House to take a proactive role in reducing uncertainty about their child's illness, reducing their individual stress, and increasing their social support. Strain (stress)--A syndrome of physical, behavioral, and cognitive symptoms that are elicited to varying degrees by environmental demands upon an individual Uncertainty-In the model of perceived uncertainty in illness as proposed by Mishel (1981), the characteristics of uncertainty in illness reside in the nature of the stimulus, the characteristics of the perceiver, or an integration between stimulus and perceiver in relation

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17 to four illness events: vagueness, lack of clarity, ambiguity, unpredictabil ity. Organization of the Study The remainder of this study is organized into four chapters. Chapter II is a review of the relevant literature on crisis intervention theory and illness; hospitalization; uncertainty, stress, and social support; counseling interventions; and Ronald McDonald Houses. In chapter III the methodology of the study, including a description of the population and sample, the sampling procedure, the instruments, the data collection procedures, and the proposed data analysis are presented. The results of the study are presented in chapter IV. In the final chapter, chapter V, a discussion and interpretation of the results, the limitations of the study, and recommendations for future research are described.

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CHAPTER II REVIEW OF THE LITERATURE In this chapter, literature related to this study is reviewed in five topical areas: (a) crisis intervention theory and illness; (b) impact of a child's hospitalization on mothers; (c) coping and mothers: uncertainty, social support, and stress (strain); (d) counseling interventions; and (e) Ronald McDonald Houses as therapeutic milieu. Crisis Intervention Theory and Illness According to crisis theory, three things happen: (a) a person in crisis perceives a difficulty; (b) there is significance to the threatening situation; and (c) there is a loss of resources for immediate coping with the situation (Caplan, 1961). Crisis intervention therapy is employed to restore a sense of equilibrium in the individual. The work of Caplan (1961) and Lindemann (1944) form the background for research in crisis intervention and gives insight into the impact of serious illness on a family. When facing a crisis, a person may be confronted with stressful events occurring simultaneously with no awareness of what has occurred and which event requires priority in problem solving. This state of diseqil ibrium is accompanied by anxiety and depression. Balance can be restored when the distressed person has a realistic perception of the stressful event plus adequate situational support and adequate coping 18

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19 mechanisms. This combination results in resolution of the immediate problem, regaining of equilibrium, and dissolution of the crisis (Caplan, 1961). The Chinese characters that represent the word "crisis" mean both danger and opportunity. Crisis is a danger because it threatens to overwhelm the individual. It is also an opportunity because, during times of crisis, individuals are more receptive to therapeutive influence (Aquilera & Messick, 1986). Transitions over the life span predictably create stress within a family system and may move an individual or whole family unit to a state of crisis. When an individual in crisis is at a turning point and facing a problem that cannot be resolved by using coping mechanisms that have worked before, tension and anxiety increase and the person is caught in a state of great emotional upset, unable to take action to solve the problem (McCubbin & Figley, 1983). Crisis theorists have maintained that the situational precipitating event for crisis may be "accidental" (e.g., sudden illness or death of a loved one) or "developmental" (e.g., entry into marriage or birth of a child) and its potential for instituting a crisis is a function of the emotional reaction of the individual and not necessarily the event itself (Caplan, 1961). Since a state of crisis is conceived to have growth-promoting potential, in developing crisis theory, authors have most heavily emphasized the nature of the individual reaction to whatever stressful situation may have occurred (Calhoun, Selby, & King, 1976). Crisis theory offers the advantage of characterizing a state which occurs frequently in the life cycle of the individual or family and during

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20 which the helping professions are apt to have access to people and are likely to be active. In a historical overview, Aguilera and Messick (1986) emphasized the broad base of knowledge that has gone into the development of the crisis approach to therapeutic intervention. Freud's principle of causality stated that every act of human behavior has its cause in the history and experience of the individual. An ego analyst versed in Freud's theoretical contributions, Heinz Hartmann, postulated that a person's adaptation in early childhood, as well as the ability to maintain adaptation in later life, had to be considered. Sandor Rado, in developing the concept of adaptational psychodynamics, emphasized the immediate present without neglecting the influence of the developmental past. Primary concern is with failures in adaptation "today." It was Erik Erikson, however, who furthered the theories of ego psychology by focusing on eight stages of psychosocial development, each with its specific developmental tasks, that span the life cycle (Erikson, 1950). Erikson's theories provided a basis for the work of Caplan (1961) and Lindemann (1944) and their consideration of situational crises and individual adaptation to current dilemma. Caplan maintained that all the elements that compose the total emotional milieu of the person must be assessed in an approach to preventive mental health. The material, physical, and social demands of reality, as well as the needs, instincts, and impulses of the individual, must be considered as important behavioral determinants. From his research, Caplan evolved the concept of the importance of crisis periods in individual and group development.

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21 Lindemann's (1944) theory of "preventive intervention" was intended to prevent psychopathology and gave rise to the concept of contemporary crisis intervention. Recognizing the potential for utilizing preventive intervention programs, Lindemann and Caplan established the Wellesley Project in 1946 which was the first community-wide program of mental health of its kind (Aquilera & Messick, 1986). Lindemann chose to study bereavement reactions in his search for social events or situations that predictably would be followed by emotional disturbances. In his classic study of bereavement reactions among the survivors of the 1942 Boston Coconut Grove nightclub fire, Lindemann described both brief and abnormally prolonged reactions in different individuals as a result of a loss of a significant person in their lives. The concept of crisis as formulated by Lindemann and Caplan refers to the state of the reacting individual who is in a hazardous situation. Not all individuals in a hazardous situation will be in crisis, though there are certain conditions, such as death, that induce a state of crisis of greater or lesser intensity to nearly all individuals. Lindemann maintained that although pathological sequelae might appear, the reactions are transitory adjustment struggles during a time of crisis. Sequelae could be avoided by intervention that helped the ind ividual in crisis to identify, understand, and master psychological tasks posed by the stressful situation. Much of the work in intervention is, therefore, aimed at raising the client's self-esteem by emphasizing the concrete facts of the current situation and assisting the client's own efforts at changing them by teaching specific skills in an organized, systematic way

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22 (Puryear, 1979). Rapoport (1971), in discussing crisis intervention, reported that adaptive resolution, that which serves to strengthen the individual's or family's adaptive behavior, requires (a) accurate appraisal of the crisis creating situation, (b) appropriate management of affect to reduce tension while allowing for problem solving, and (c) willingness to seek and accept help while mastering the problem. The continuing research on life transitions and therapeutic intervention underscores the importance of promoting individual strengths and capabilities so that a person can successfully resolve crises on their own, if possible (Figley & McCubbin, 1983). As psychotherapy, crisis intervention is the informed and planful application of techniques derived from the established principles of crisis theory by persons qualified through training and experience to understand these principles with the intention of assisting individuals or families to modify personal characteristics such as feelings, attitudes, and maladaptive behaviors (Ewing, 1978). A low-cost, short-term therapy, crisis intervention is involved with solving the immediate problems facing a client (Aguilera & Messick, 1986). From the standpoint of intervention, the task is not to end the crisis, for nature takes care of that. The task is to maximize the level of functioning when the crisis does end (Jacobson, 1980). As with the events around mass disasters, such as floods and tornados that constitute crisis, the paradox of "ordering reality" versus the "unreality of order" frustrates the investigator who tries to describe the overlapping and disturbing events that occur when serious illness strikes a family (Davis, 1963). The terminology of the

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23 perceptual/interpretative process of crisis may be employed in describing the process mothers undergo within the framework of a child's illness. To see one's child healthy and active one day and to be forced, a day or two later, to consider the likelihood of a child becoming permanently handicapped or dying entails an alteration in fundamental perceptions. Following, in part, the terminology used in human disaster studies, Davis (1963) designated the developmental stages of illness as crisis in families: the Prelude Stage, the Warning Stage, the Impact Stage, and the Inventory Stage. The Prelude Stage extends from the time mothers, in a state of equilibrium, become aware that the child is not feeling well until they apprehend some cue that the indisposition is not ordinary. The commonplace appearance of the prodromal symptoms, such as a ubiquitous virus with accompanying vomiting and diarrhea, often impart elements of unreality to the whole crisis experience when an illness later proves to be fatal Symptomological (i.e., dragging a leg), behavioral (i.e., a 4-year-old outdoing a 6-year-old in a tussle), environmental (e.g., a local outbreak of an epidemic), or authoritative (e.g., an explanation by a doctor) cues that block the mother's common sensical diagnosis of the illness identify the Warning Stage. The more that a pathological state is "brought on" through the willful action of the individual, the more likely it is that the condition will be defined as a moral or behavioral deviation rather than an illness (Yarrow, 1955). The Impact Stage occurs when the passage of time and exacerbation of symptoms convinces mothers of diagnosis. Interaction between doctors and mothers

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24 during impact may produce ambiguous communication. Mothers may arrive at the hospital determined to prove a doctor wrong and with a definite agenda as to their child's care. Parents become initiated in the art of "hearing between the lines." Within a few days of Impact, with its accompanying feelings of despair, the Inventory Stage, with hopefulness, occurs creating within mothers a fluctuating internal dialectic, as well as the realization that the family has been singled out for misfortune. This crisis of illness, in spite of its feelings of alienation, can be a time of re-evaluation of the self and one's bonds with one's "fellow man" (Davis, 1963). Impact of a Child's Hospitalization on Mothers In her family systems approach to therapy, Virginia Satir (1972) likened the family to a mobile. In a mobile all the pieces, no matter what size or shape, can be grouped together in balance by shortening or lengthening the strings attached, or rearranging the distance between the pieces. So it is with a family. None of the family members is identical to any other; they are all different and at different levels of growth. As in a mobile, you can't arrange one without thinking of the other, (p. 119) For the mother of a sick child, hospitalization demands adaptations that touch every aspect of her role as a woman and her relationships with each member of the family constellation. The maternal role may be one of the most difficult and complex roles in our society today (Pasley & Gecas, 1984). Besides demanding insight and energy, parenting is further complicated by the fact most couples are not prepared to assume the responsibilities of the role (LeMasters & DeFrain, 1983). The maternal role becomes even more

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25 complicated when a sick or handicapped child appears affecting each individual within the system. In regard to research or practice, counseling has not kept pace with other fields, such as pediatrics and social work, on the effect of handicapped children on parents (Seligman, 1985). Goode (1984), in his study, observed that much family energy was absorbed in deciding how best to present a handicapped child to others and that the family's identity was inextricably tied to the identity of the sick child. Presentation of the sick child differed according to specific situations and audiences, and for the family, the whole point of managing their presentation of the child was to understand what the child's image (and thus their own) meant to others. Maternal behavior may also hamper family function and contribute to the immaturity of the family system by holding the disabled child less responsible than a less disabled child for his or her behavior (Roessler & Bolton, 1978). Researchers have shown that to study the hospitalized child it is necessary to look at the effect of hospitalization on the individual parent of the sick child. Gofman, Buckman, and Schade (1957) reported the incidence and degree of maternal anxiety to be great in their study to assess the prevalence of anxiety among mothers of hospitalized children. Of 100 surveyed parents, all expressed some anxiety about the hospitalization and 57% considered the anxiety to be overwhelming. More recently, several investigators have looked at maternal concern around child hospitalization. Skipper et al (1968) found mothers' anxiety to be high during children's surgery. In another study, Kessler (1969) found maternal anxiety high in mothers with young children hospitalized for the first time. Eighty percent of the mothers in Kessler's study

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26 were moderately or severely stressed by the situation with anxiety varying with social class. Middle-class mothers were more anxious than either upperor lower-class mothers. Frieberg (1972), in a survey of mothers of hospitalized children, found the factors most commonly cited by mothers as contributing to their anxiety were lack of information about diagnosis and procedures, treatments, and children's medical condition. Kazak and Marvin (1984) found that mothers of handicapped children tended to be more vulnerable to the effects of stress than were mothers in a control group or fathers in either a treatment or control group. Recent researchers have explored the emotional contagion that can exist between the ill child and his/her mother. In a study of diabetic children by Margalit (1986), the anxiety levels expressed by 20 diabetic children, the level of anxiety ascribed by their mothers, and the anxiety levels of 20 healthy children were studied. The children in the diabetic study did not form an emotionally deviant group in terms of their expressed anxiety, although their mothers viewed them as significantly more anxious than they judged themselves. The mothers' own anxiety was the best predictor of their perceptions of their children's anxiety. Bush et al (1986), in an outpatient clinic study, found that mothers who were agitated provided less information and ignored their children more, suggesting a pattern of parenting rendered less effective by the disorganizing influences of maternal anxiety. Research on children and hospitalization supports the contention that a person's cognitive approach to tasks and the choice of coping skills will determine how one recovers from an illness (Thompson, 1986).

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27 The impact of the hospitalized child on mothers may be appreciated through examining the model of illness presented by Moos and Tsu (1977) in which they outlined seven major adaptive tasks concerned with illness. Adaptive problems the sick child's family encounters are as follows: (a) dealing with pain and incapacitation, (b) dealing with the hospital environment and special treatment procedures, (c) developing adequate relationships with the professional staff, (d) preserving a reasonable emotional balance, (e) preserving a satisfactory self-image, (f) preserving relationships with family and friends, and (g) preparing for an uncertain future. Dealing with Pain and Incapacitation Most children report the injection to be one of the most threatening experiences in health care (Ellerton, Caty, & Ritchie, 1985). In a study of 128 school -aged children, 86% rated the needle as stressful and 36% rated physicians as stressful. Shaw and Routh (1982) studied the effects of parental presence during an injection on the behavioral responses of 18-month-old and 5-year-old children. Crying during the injection was found to be significantly more common among children of both ages when parents were present. The researchers interpreted these findings as supportive of maternal presence, proposing that, under the stress of an injection, children may be more emotionally upset in the sense of physiological arousal when their mothers are absent than when they are present. The presence of mothers, they suggested, may serve as a disinhibitor which permits free expression of children's feelings.

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28 Dealing with the Hospital Environment and Special Treatment Procedures Separation from parents was identified by Vernon, Foley, Sipowicz, and Schulman (1965) as a major factor contributing to the immediate and posthospital psychological upset of preschool children. Research on the impact of rooming-in to avoid separation anxiety has produced mixed results. Thompson (1985) and Lehman (1975) reported that children of rooming-in parents were more aggressive in the hospital than were others. This is, Lehman (1975) suggested, a reflection of the greater security felt by the children in the presence of the parent. Research on posthospital effects associate rooming-in with a reduction of postoperative complications (Brian & Maclay, 1968; Lehman, 1975). Developing Adequate Relationships with the Professional Staff As with the family with a child on hemodialysis. Levy (1979) found that family members are often extremely angry for being taken for granted and having expectations placed on them without any exploration concerning the impact of illness directly upon themselves as opposed to its impact upon the ill member. Many family members have expressed a great degree of anger that the congratulations of the professional team for success of the patient in treatment is rarely expressed to the family member whose role may have been a great one in augmenting or even being instrumental in the patient's coping with and successful adherence to the medical regimen. Preserving a Reasonable Emotional Balance The unspoken quid pro quo of the marital relationship may be disrupted by the emotional demands of a child's illness. Walker (1983)

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29 maintained that guilt, helplessness, difficulty in reversing an established pattern of anticipatory mourning, and a feeling of isolation all play their part with the mother of the hospitalized child. It is only by examining the individual ways in which the parent-child coalition is maintained, protected, and even intensified by interaction with other systems (e.g., the nuclear and extended family systems, the family system in the previous generation, and the medical system) that we can understand why some coalitions have become so resistant to change. In a study by Velasco de Parra, Davila de Cortazar, and Covarrubius-Espinoza (1983) on adaptive patterns of 10 families with a leukemic child, all parents described a decrease in their activities as a couple, as well as a diminution in the frequency and quality of their sexual relations. The main topic of conversation and/or discussion, if not the only one, became the child's disease, and in 80% of the cases, the patient began to sleep with the parents soon after the leukemia was diagnosed. Many parents seem to be grieving for a lost child even as they interact with their living-but-sick or handicapped child. In the case of seriously ill newborns, the perfect child fantasized by both parents, independently, sometimes unconsciously, throughout the pregnancy, has died before he or she could ever come fully to life (Trout, 1983). Preserving a Satisfactory Self-imaae Young children who are not given reasons for hospitalization may conclude they are being punished or sent away because they misbehaved. This may contribute to a set of assumptions about their worth.

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30 reciprocity, and their capacity to limit helplessness and gain nurturance (Frears & Schneider, 1981). Difficulty in maintaining a positive self-image can be intensified when the person who is ill is separated from the family or undergoes changes in appearance and bodily functions as well as such unpleasant feelings as anger, guilt, and helplessness (Feuerstein, Labbe, & Kuczmierczyk, 1986). Loss of hair, jaundice, stunted growth, obesity, or amputation are sources of great distress for both the child and the parent. Each family member must find ways of coping and maintaining a positive self-image. Many parents are counseled now about the positive value of school in the overall adjustment of even seriously ill children (Waechter, 1984). Waechter also found that those children with fatal illness who had a greater opportunity to discuss their fears and concerns about their future and present body integrity expressed less specific death anxiety. This finding supported the hypothesis that understanding acceptance or permission to discuss any aspect of an illness may decrease feelings of isolation, alienation, and the sense that the illness is too terrible to discuss. Thus, each member of the family is involved in the task of preserving a satisfactory self-image. Preserving Relationships with Family and Friends Although intrapersonal factors such as an individual's age, personality style, and mechanisms for coping with the mourning and adjustment processes are significant for the patient's rehabilitation after injury, a major interpersonal factor in recovery is the patient's family (Hendrick, 1981). This applies even when the family members are

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31 going through a traumatic event themselves. The family of the spinal cordinjured patient experiences a shock reaction which parallels that of the patient (Eisenberg & Gilbert, 1978). In a study of 30 families with chronic illness, Penn (1983) found over one-half the families with chronic illness were extremely resistant to change. Two coalition configurations surrounding, as well as within, the families were observed. The expected coalitions form inside the family (e.g., parent and child); however, due to the permeable boundaries of a family with a chronic illness, coalitions also occur outside the family dynamics between a family member and people outside the immediate family circle. In tracking interactional events around the coalitions inside the family, Penn (1983) discerned a form of binding interaction that acts to hold the family in stasis. The family's resistance to change seems equal to the strength of these interactions holding them in stasis. In families with chronic illness there is an open sanction for the parent and child alliance. It does not have to become covert since the system is not considered pathological; there is no secrecy, no disqualification of meaning, and the parents do not change sides as they do in pathological systems. Somehow the members of the system refuse the choice of other alliances during the span of the illness, as if to change any other part in the system would further injure the family and its ill member. It is within this framework that a family will determine whether it will manage an illness or be managed by it. Siblings of ill children report a high number of changes in feelings and behavior (Craft, Wyatt, & Sandell, 1985). Siblings who receive limited explanations of the ill child's condition reported more

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32 changes than those given no explanation. It is possible that a vague explanation by parents creates anxiety. Of particular importance, the most desirable outcome resulted from open explanations. Sibling perceptions of parenting showed parents to be less lenient, preoccupied, spending less time with the siblings, and less easily angered. The effects of parenting on sibling reaction are illustrated by the finding that siblings who perceived their parents to be angered more easily reported increased changes. When siblings are not told about the seriousness of the disease while the leukemic child is alive, problems between parents and children are likely to arise after death (Kaplan, Grobstein, & Smith, 1976). Preparing for an Uncertain Future Once the determination has been made that death of a hospitalized child is inevitable, parents report they want intervention to help them manage the issues around child death (Small ,1985a) Parents may begin to refer to the child in the past tense, showing evidence of anticipatory grief (Adams, 1974). There are parents who refuse categorically to accept the idea of death and are sustained by a level of denial that is catastrophic when the actual loss occurs (Koch, Hermann, & Donaldson, 1974). Even where there is genetic counseling for parents with a child with an inherited disease, outcomes are uncertain. Although parental emotions around the uncertain future of their child range from denial to anticipation, researchers have shown that parents' perception of information governs their thinking even when they have some control over the future of a child. Evers-Kiebooms and van der

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Berghe (1979) showed that with 200 couples, past reproductive experience and parental desire for children explained much more of the variance in reproductive outcome than did such variables as reproductive risk, burden of the genetic disorder, education, background, or socioeconomic status. Furthermore, the psychological state of parents under stress and how they perceived the factual information seemed more important for their decision than what the facts were (Lippman-Hand & Fraser, 1979). When these adaptive measures around illness are demonstrated, it is obvious the mother of the seriously ill child is contending with a multitude of issues calling for her to exhibit maternal adaptation and expertise (Sourkas, 1982). Coping and Mothers Coping resources are generalized attitudes and skills that are considered advantageous across many situations. They include attitudes about the self and the world and intellectual skills. Coping styles are generalized coping strategies and coping efforts are specific actions taken in specific situations that are intended to reduce a given problem or stress. Meng and Zastowsky (1982) reported that subjects trained in coping skills displayed less anxiety than did subjects in another, unspecified control group. Coping strategies have been conceptualized in many differnt ways and effective coping strategies could be of value in lowering the anxiety of mothers of hospitalized children. Coping, as defined by Lazarus and Folkman (1984), consists of the constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or

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exceeding the resources of the person. They made a distinction between coping and automatized adaptive behavior. Coping is an effort to manage, thus coping includes anything that the person does or thinks, regardless of how well or badly it works. By using the word manage, the researchers avoid equating coping with mastery. Managing can include minimizing, avoiding, tolerating, and accepting the situation as well as the environment. Coping is hypothesized to have two functions: (a) the alteration of an ongoing person-environment relationship (problem-focused coping) and (b) the control of stressful emotions or physiological arousal (emotional regulation). An example of emotional regulation would be a visibly anxious mother of a hospitalized child visiting the intensive care unit in tears before her child's surgery. An example of problem-oriented coping would be a mother asking the doctor questions about her child's diagnosis, medical regimen, and prognosis in order to gather information for her own education before her child has surgery. It is often the combination of both forms of coping that influence the outcome of stress (Feuerstein et al 1986). Lazarus and his associates have perhaps had the greatest impact on the study of stress and coping (Feuerstein et al 1986). According to Lazarus and Folkman (1984), cognitive appraisal, or evaluation, of potentially stressful events mediates psychologically between the individual and the environment when the individual encounters a stressful event. It is the individual's evaluation that determines whether a stressor is harmful. The evaluation is, in turn, partly a function of the resources available to the individual to neutralize or tolerate the stressor. The individual continually re-evaluates

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35 judgments made about demands and constraints characteristic of various interactions with the environment and the various options and resources available to meet the demands. The extent to which an individual experiences psychological stress is determined by the evaluation of both what is at stake (primary evaluation) and what coping resources are available (secondary appraisal). Primary appraisal addresses the question, "Am I OK or am I in trouble?" while secondary appraisal asks, "What can I do about this situation?" Factors that can influence secondary appraisal are a function of the individual's previous experience with similar situations, general belief patterns, and the availability of coping resources at that particular time such as personal health, material resources, problem-solving skills, and level of energy (Folkman, 1984). The diversity of coping efforts available to the individual is enormous and interest is aroused as to how mothers of hospitalized children cope. Billings and Moos (1981) used a representative adult community sample to focus on the role of coping responses and social responses as intervening variables mediating the effect of life events on personal functioning. Small but significant sex differences were found. Women reported more use of active-behavioral avoidance and emotion-focused strategies than men. Higher levels of education were related to active-cognitive and problem-focused coping and less to avoidance coping. Only modest differences in type of coping used were revealed among different types of events. More active and task-oriented responses were noted in coping with an illness than a death. Folkman and Lazarus (1980) also found that health-related stressors elicited fewer problem-focused and more emotion -focused coping than work

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36 or family stressors. However, they noted that women were more likely to use avoidance coping, which was associated with greater impairment of functioning. This is congruent with the findings of Pearl in and Schooler (1978), who also identified a tendency for women to use less effective methods of coping than men. In the Holahan and Moos (1981) study, these results may be accounted for by the fact that a majority of the men were employed while a majority of the women were homemakers. Assessment of the effectiveness of coping must consider the individual's baseline level of functioning as well as the context in which coping takes place. Thus, research on the coping of women with hospitalized children could alter what is generalized about women and coping. Uncertainty Perceived uncertainty, a judgment about an event or situation, was identified as one of the conditions contributing to a stress response in hospitalized adult patients (Mishel, 1981). The characteristics of uncertainty, as proposed by Mishel, may reside in the nature of the stimulus, in the characteristics of the perceiver, or in an interaction between stimulus and perceiver in relation to four general classes of illness-treatment events. When an event generates uncertainty, it will be judged as containing one or more of the following characteristics: (a) ambiguity, (b) lack of clarity, (c) lack of information, or (d) unpredictability. Successful psychological management of the ill child is influenced by the effectiveness of the parents' coping with the illness events (Wolfer & Visintainer, 1975). The general assumption in the literature is that children are very sensitive to the emotions of

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37 adults, particularly parents. When parents are able to cope with their feelings, they can serve to reassure their child. Research results indicate that mothers of hospitalized children live with considerable uncertainty. Frieberg's (1972) research indicated that uncertainty regarding procedures and treatment and lack of information was a source of maternal anxiety. In a study by Falvo, Woehlke, and Deichmann (1980) on patient compliance, the most important indication was the trend of the relationship between patient compliance and perception of the physician giving clear explanations about treatment and disease. In a study by Barbarin and Chesler (1984) on families with childhood cancer, a stronger association between coping and the quality of relationships with medical staff was found than with any of the other psychosocial outcomes associated with uncertainty, such as information seeking and problem solving. Perceived uncertainty in parents of hospitalized children can hamper their appraisal of events and coping mechanisms (Mishel, 1983). Parents of seriously ill children may feel they have lost control of their child's care. Parental role deprivation can contribute to anxiety (Brazelton, 1976). Within the hospital setting, tests and treatments done off-schedule or tests ordered without the mother's knowledge or consent serve to enhance ambiguity. During the past decade, there has been an increase in research in the area of families of dying children. The advances in cancer therapy, while prolonging life, have increased the uncertainty for families whether or not their child will survive (Schowalter, 1986). Cure is now spoken of in acute lymphocytic leukemia (ALL) where this was not possible before. Koocher and O'Malley (1981), in "The Damocles

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Syndrome," discussed the ambiguity and uncertainty of parents and the pressures felt when a child has an illness that might or might not prove fatal. It is still difficult, if not impossible, to kill cancer cells without killing or damaging normal cells. Children treated for brain tumors, especially young children, show diminished intellectual and academic functioning (Eiser, 1981). Cranial irradiation and intrathecal chemotherapy, especially when used in combination, are particularly damaging to cognitive abilities in the treatment of ALL (Meadows & Evans, 1976). There is still considerable debate as to how much psychosocial disability accrues to children from exposure to severe, repeated, or chronic physical illness. Koocher and O'Malley (1981) indicated that more than one-half the survivors in their study show at least mild psychiatric symptom formation. Uncertainty will continue. With cost containment becoming a major criterion for choice of treatment mode, one can assume that earlier home care will become increasingly common for financial as well as psychosocial reasons (Schowalter, 1986). Coupled with this knowledge is the tension illness adds to family dynamics. Although some couples claim that the issues around a dying child bring them together, most couples experience significantly more disharmony in their marriage as a result of the physical and psychological pressures that accrue (Koocher & O'Malley, 1981). Thus, it would appear that maternal uncertainty around hospitalized children will continue to be a problem for mothers. To recover from the crisis presented by their child's illness, parents must be able to understand and manage the situation (Hymovich, 1976). They need to receive specific explanations of the illness.

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course of the disease, prognosis, and treatments and procedures the child is receiving and also perceive, and accurately understand, the information provided (Comaroff & Maguire, 1981). Although the need to assess parents' comprehension, perception, and coping strategies has been recognized, the role of parental perceptions concerning their child's illness is sparse. To develop a theory on coping in parents of ill children, quantitative measurement tools need to be developed and significant perceptual variables influencing parents' responses need to be identified (Mishel, 1982). Social Support Thus far, investigators have shown that social support is an important means for helping parents cope positively with the stresses of parenting. In her study of young mothers, Colletta (1981) found that those with high levels of social support were more affectionate, closer, and more positive with their children, while those with low levels of support were more indifferent, hostile, and rejecting of their children. Although support did not have a direct effect on parenting behaviors, it did serve to mediate the effects of stress and depression. Support can be thought of as the degree to which the individual has access to social resources, in the form of relationships with others. Cobb (1976) described social support in terms of benefits associated with feelings of being loved and valued and belonging to a network of communications and mutual obligations to others. In distinguishing quantity versus quality of social support, Schaefer, Coyne, and Lazarus (I98I) suggested using the terms "social network" and

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40 "perceived social support." Perceived support is more important than received support in predicting adjustment to stressful life events (Wethington & Kessler, 1986). A social network can be thought of as the set of relationships of one individual and defined in terms of its composition and structure (e.g., the number of people involved and the number who know each other) or by the content of particular relationships (e.g., friendship and kinship) (Schaefer et al, 1981). Perceived social support involves the individual's feelings and thoughts of how helpful the interactions or relationships are within the social network. Although there is no general agreement on what constitutes social support, there is considerable evidence that an individual's interactions with others plays an important role in that person's response to stress. A lack of consensus continues to exist on what actually constitutes social support (Vaux, 1985). Vaux viewed social support as a metaconstruct with at least three facets: resources, behaviors, and subjective appraisals. Support resources include relationships and involvements that are potential sources of supportive behaviors and feelings that one is supported. These resources are assessed through network measures. Supportive behaviors are specific acts such as listening and comforting. Subjective appraisals involve the individual's perception of the amount and quality of support and focus on satisfaction received and perceived quality. It includes the belief that one is cared for and the availability of support. Vaux (1985) further contended that it is important to distinguish between the facets of support (resources, behaviors, and perceptions) and the modes

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41 of support (emotional or advice/guidance) to analyze social support. Vaux concluded that even when women report more support than men, they do not necessarily report less distress. This variation in social support across gender may be a function of biological sex differences, but is more likely a function of gender differences in social roles (i.e., one gender predominates in the role). Therefore, support may have a greater impact on well being for women. Zarski, Bubenzer, and West (1986), in a recent review of social interest, stress, and the prediction of health status, reported conflicting research results when frequency of hassles are associated with poor overall health and number of somatic symptoms. Social interest was consistently associated with high overall health, fewer somatic symptoms, and high energy level. By using intervention strategies designed to enhance the client's social interest, the health practitioner can effect changes in the client's lifestyle. In a study of 148 married adults, Ferrari (1986) found that parents of chronically ill children perceive a lesser amount of social support than do adults who parent healthy children. Ferrari's research explains, in part, why moderately handicapped children and families are likely to go longer before receiving intervention as social support networks frequently respond in a supportive way when they perceive a lot of support is needed. A striking example of the mediating influence of social support on stress is associated with the nuclear power plant accident at Three Mile Island and the comprehensive study of that incident by Fleming, Baum, Gisriel, and Gatchel (1982). They conceptualized the Three Mile Island

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42 event as stressful because the residents reported a number of stress symptoms after the accident (Flynn & Chalmer, 1980). The measure of social support used was a 6-item scale assessing an individual's perception of social support. The results indicated that three Three Mile Island groups demonstrated greater evidence of stress across psychological, behavioral, and biochemical measures than did the control groups. Also, minimal social support was associated with a greater frequency of stress-relevant problems for Three Mile Island residents, whereas Three Mile Island residents with moderate or high levels of social support reported fewer stress-relevant problems. The moderating effect of social support was not uniform across all components of the stress response, since all of the Three Mile Island residents had high catecholamine (epinephrine and norepinephrine) levels by urine test. Fleming et al (1982) concluded that perceived support serves to facilitate coping (psychologically and behavioral ly), but does not protect individuals from a greater degree of physiological arousal, as indicated by high catecholamine levels. In examining the role of social support and its significance for mothers of hospitalized children, one has only to look at the work of Bruhn and Philips (1984) to see its relevance. Bruhn and Philips concluded the following: 1. Social support is dynamic, with its form and quantity varying over time. 2. Social support has interactive, qualitative, and quantitative dimensions that should be simultaneously addressed. 3. Perception of availability and need of support are important factors for use of such support.

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43 4. The need for support varies across life situations and life cycle. 5. Social support is an aspect of daily living, although the need for such support may vary in times of stress. 6. Changes in physical, psychological, and social functioning can influence perception of need and availability of social support. 7. Individuals, groups, institutions, and communities must be considered, from a systems perspective, to define social support adequately. 8. Social support can exert positive and negative effects. 9. Social support can vary as a function of culture and sociocultural factors must be considered when attempting to measure it. 10. Research should focus on the mechanisms of action of social support in addition to its effects. 11. Longitudinal studies that incorporate psychosocial and biological measures on cohorts over long periods of time are needed. In recent research, Thoits (1986) reconceptual ized social support as coping assistance. If the same coping strategies used by individuals in response to stress are those that are applied to distressed persons as assistance, models of coping and support can be integrated. In problem-focused coping, one can reinterpret existing circumstances so they seem less threatening to the self or they can shift attention to comparison with others less fortunate. Thoits would argue that sympathy or empathy from similar others is a crucial condition for the seeking and acceptance of coping assistance. Because others share the same feelings, despite the social unacceptabil ity of feelings, others are

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44 less likely to reject the person experiencing them. Thoits proposed that individuals must perceive empathic understanding in others before coping assistance will be sought and accepted. Also, others who are socioculturally or experientially similar to a distressed individual are most likely to be perceived to be empathic. This factor has particular relevance for the mothers of hospitalized children and suggests that mothers may be a strong resource for other mothers. Thoit's (1986) findings appear to corroborate the findings of Lehman, El lard, and Wortman (1986). They found that the support provider is likely to be unhelpful if he or she is made to feel anxious or threatened by the plight of the support recipient. This finding is important because the social support field, until now, has not considered the impact of stressful events on anyone other than the individual experiencing those events (Heller, Swindle, & Dusenbury, 1986). Also of interest, and relevant to examining support for mothers, is the work of Coyne and DeLongis (1986) which revealed that those who most need social support may be too extended by their role overload or poverty to be able to take advantage of support when it is available. Stress fStrain) A general review of stress (strain) can lend insight into the impact a child's hospitalization has on mothers. Hans Selye (1956), a pioneer stress researcher, viewed stress in terms of a nonspecific, adaptive response of the body to any agent or situation. The degree of response may vary as a function of the intensity of the demand for adjustment. The same systemic reaction (general body response) can be

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45 triggered by stress-producing agents (stressors) that are pleasant or unpleasant. The theme of general stressors, or specific situations that require some form of adjustment, were shown in the research of Holmes and Rahe (1967) and continued in the work of Pearl in and Schooler (1978) on individuals in multiple roles such as marriage partners, parents, and workers. The stress-response is a complex pattern that may have psychophysiological, behavioral, and cognitive components. Psychophysiological response according to Pearl in and Schooler is conceptualized as either a nonspecific or specific response to physical as well as to psychological stressors. Selye (1974) maintained that the choice of which type of behaviors to observe is often complicated. Although many aspects of an individual's behavior relative to stress could be important, no comprehensive source of data has been available on the use of self-report of behavior in studying stress (Feuerstein et al 1986). Cognitive assessment can refer to a wide variety of measures designed to measure thoughts, beliefs, attitudes, and mood. Averill (1973) placed emphasis on two components of cognitive control --information gain and anticipated response--as determining mood. When female subjects kept diaries, Eckenrode (1984) found that concurrent daily stressors and physical symptoms, in addition to previous levels of psychological well-being, were the most important direct determinants of mood. Life events and chronic stressors indirectly affected mood through the influence of daily stressors, physical symptoms, and psychological well-being. In examining stress in mothers of hospitalized children, the search may have more meaning if stress can be associated with a theoretical

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46 model. Reaching a generally accepted definition of stress or strain is difficult, since there are several approaches or models to understanding the concept of stress: response-based, stimulus-based, transactional, and information-processing models. In order to understand mothers of hospitalized children, it is useful to examine the interactional model of stress for its proponents maintain that stress occurs through a particular relationship between the person and the environment. One version of the interactional model is the transactional model of stress as proposed by Lazarus and Folkman (1984). They proposed a cognitive theory of psychological stress, although stress is usually defined as either stimulus or response. Lazarus and Folkman emphasized stress as a relationship between the characteristics of the person, on the one hand, and the nature of the environmental event on the other. The individual is thought of as an active agent in the stress process, and it is postulated that self -management of cognitive, behavioral, and emotional coping strategies influence the impact of the stressor. Lazarus and Folkman have identified three kinds of cognitive appraisal: primary, secondary, and reappraisal. Primary appraisal determines whether an event is irrelevant or stressful and the extent of the demand on the person. Secondary appraisal is a judgment concerning what might and can be done with available resources and reappraisal refers to a changed appraisal based on new information from the person or the environment. How the person responds to stress is thought to have short-term and long-term consequences in terms of social and moral functioning as well as somatic health. The interactional model allows for individual differences and helps explain why all people under stress do not experience ill effects.

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47 Cox (1980) proposed models that focus on the transactional and ecological nature of stress as well as the importance of the individual's cognitive and psychological sets in evaluating the stressors. The Cox model also specifies the existence of feedback components, therefore, describing a cyclical rather than a linear system. The model has five discernible stages. In the first stage Cox identifies the existence of demands or stressors placed on the individual, such as a family member who constantly requires one's involvement. The second consists of a person's perception of internal and external demands and of the ability required to meet the demands, such as a mother wanting to be with her hospitalized child when her employer is threatening to dismiss her. Stress occurs when an imbalance between perceived demand and perceived coping ability exists. Such variables as personality, ego strength, and intelligence account for individual variations in the cognitive appraisal of stress. The third stage of the model represents the stress response, which is a method of coping with multiple stressors, such as when a mother of a hospitalized child wants or needs to work, but chooses to give up her job to be with her child while self-medicating to stop migraine headaches. The subjective emotional experience of stress is accompanied by cognitive, behavioral, and physiological changes. The fourth stage is concerned with both the actual and perceived consequences of the coping responses, such as when the mother realizes that, regardless of what she does, she will soon be both jobless and childless. Stress may continue when demands are not met or negative consequences from failure are anticipated. The fifth stage consists of the feedback that occurs throughout the system and may

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48 shape events at any point in the system, such as when the mother acknowledges to herself that her child probably will die, but that she must go on living for the rest of her family. Feedback of appropriate responses can enhance the individual's ability to adapt. Feedback of inappropriate responses may intensify the stress response and cause greater damage or may alert the individual to change a response, if possible, or to seek intervention (Feuerstein et al 1986). Figley & McCubbin (1983), in their extensive review on the family coping with catastrophe, reported on the results of McCubbin's study of 500 families with a child with chronic illness. This investigator identified three coping patterns that parents use to manage life when a child has a chronic illness: (a) maintaining an optimistic outlook, (b) maintaining social support and self-esteem, and (c) understanding the medical situation through communication with other parents and consultation with the medical staff. Counseling Interventions A search of the relevant literature reveals little information on interventions in use to decrease the uncertainty, decrease the stress (strain), and increase the social support of parents of hospitalized children. Many of the counseling and information-giving methodologies surrounding a child's hospitalization have centered around prehospital ization tours, hospital -oriented play, play therapy, interviews, and support groups intended to lower stress for parents and children, but few have been scientifically evaluated (Azarnoff et al.,1975; Peterson & Shigetomi, 1982; Schmeltz & White, 1982; Thompson,

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49 1985). Modeling films of children talking about their concerns facing surgery have been evaluated and are in use at some hospitals (Melamed, Dearborn, & Small, 1981; Melamed, Robbins, Small, Fernandez, & Graves, 1980; Vernon et al., 1965). These films, using real patients as actors to insure cultural authenticity, are intended for children and parents. They verbalize the feelings of children before surgery and desensitize the family to the surgical procedure by taking a filmed tour for the child through the preoperation procedures, the operating room up to the point of the administration of anesthesia, and through a successful postsurgical course (Small, 1980). Although little validated information on interventions for mothers exist, from a study of pediatric hospitalization and health care, Thompson (1986) concluded that the likelihood of parents obtaining a maximum amount of information or otherwise actively participating in their child's hospitalization, is dependent on family demands and social characteristics, as well as personal qualities of the parents. The cost of transportation and other cultural and economic factors, rather than fewer coping skills, are just as apt to be the reasons parents from lower social classes participate less in their children's hospitalization than do parents in other social classes (Earthrowl & Stacey, 1977). In light of some of the research being done on the cost-effective use of booklets for patient education, booklets might be considered as a mode of intervention for enhancing the coping of mothers of hospitalized children. A concerted effort for use of booklets as an intervention strategy for enhancing the coping of patients, as part of an educational, developmental approach to common problems has been

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developed in the Netherlands for patient education (Visser, 1980). Of particular interest is the fact that these booklets have been evaluated for their effectiveness. Designed with specific goals and information on a limited, structured amount of information, booklets were found to be appreciated and read by most of the patients and the information given was absorbed. Allen and Sipich (1987) have reported on a process by which a university counseling center used and evaluated self -management brochures that received a positive response. The researchers found that one limitation to the use of self -management brochures was that users may expect the brochures to present magical solutions to complex problems. Self -management booklets may be more effective than one-on-one contact with patients, they may be more cost-effective, and considering shortened lengths of stay under prospective pricing systems, they may have a particular appeal. Pardeck and Pardeck (1984), in their research, found that bibl iotherapy is effective in treating sexual dysfunction, in increasing assertiveness, promoting attitudinal and behavioral change, and in fostering self -development. Ronald McDonald Houses as Therapeutic Milieus A recent advancement that has appeared on the American medical scene to provide a therapeutic milieu for families with a hospitalized child is the concept of the Ronald McDonald House. In 1969, when Fred Hill of the Philadelphia Eagles football team had a 3-year-old daughter with acute lymphatic leukemia, the Hills slept in waiting rooms and ate out of vending machines during the frequent hospitalization of their

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51 child. From this experience, Hill realized the need for a home where parents could go to get away from the hospital for a time, to cook, do laundry, and to talk to other parents. In essence, what was needed was a homelike therapeutic milieu during the traumatic days of the hospitalization of a child. Hill, with the support of his fellow Eagles, raised funds for a house to be purchased for the families of children who were hospitalized. When local McDonald owners and operators became involved, the first Ronald McDonald House became a reality in 1972 (Small, 1985b). In Gainesville, Florida, families referred to Shands Hospital from throughout the United States were sleeping in waiting rooms and eating out of vending machines. A feasibility study and a pledge of seed money by the McDonald Corporation encouraged a group of local citizens to form a not-for-profit corporation to build a Ronald McDonald House (Small, 1985b). In 1982, the 37th Ronald McDonald House opened in Gainesville, with an expansion to the house added 2 years later, making a nightly refuge for 28 families. Ronald McDonald Houses are mostly occupied by parents, grandparents, and siblings visiting the hospitalized child. However, children undergoing treatment, such as chemotherapy, may stay in the houses while receiving daily treatments at the hospital. Ronald McDonald Houses provide facilities where families, disrupted by illness, can be reunited in an effort to bring order into their lives. The house provides each family with a bedroom, with beds for a maximum of two adults and two children, and a private bath. Guests are provided with linens when they arrive and use the laundry facilities to return clean linens when they check out of the house. Meals can be prepared in the

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52 fully equipped kitchens where a selection of food is available, at no cost, to families who cannot provide their own food. An optional donation of $10 a night per family is requested to help meet the operating expenses of the house (Small, 1985b). Although each of the 100 Ronald McDonald Houses is operated by a board of managers and has a house manager to oversee the functioning of the house, these therapeutic settings, founded through corporate initiative and maintained by corporate and local efforts, have no equivalent in America today (Jones, 1986). The homes are currently hospices for families in the United States, Germany, the Netherlands, and Australia. However, the purpose for their existence is the same. The houses are a home -away -from -home for families with a hospitalized child and families perceive them as a source of support during a time of family crisis (Jones, 1986). In a pleasant, homelike atmosphere, families get to know other families with whom they have one thing in common-concern for a sick child. Therepeutic milieus are playing an increasingly important role in the growth of 20th century pediatrics (Brodie, 1986). Since 1979, there has been a sharp break in the pattern of government support for the nation's children and elderly. Programs that aid children have suffered drastic curtailment while those that support the elderly have risen significantly. The 1983 federal benefits were estimated to be at $7,700 per person over 65 years and $770 for children. The government has left to the family, regardless of its circumstances, the responsibility for children. Advances in child health occur only when people dedicate themselves to the task of protecting and providing for their future.

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53 Reports on the future of American medicine indicate that by the start of the next century hospitalizations will be limited to the very ill and those with chronic illness (Starr, 1982). Much of the care currently provided in the hospital will be relegated to ambulatory settings (DeAngelis, 1986). The conflict between wanting to room-in, or even to visit their child, and not being able to do so for economic reasons, may increase anxiety levels of parents. Even when vast resources exist to help parents with children at time of family crisis, the nature of bureaucratic protocol necessitates manipulation to maximize efficiency. Advanced technology will increase the lifespan of many children, but will necessitate mothers spending time at the hospital to become educated and more knowledgeable about care of their sick child. In preparation for these trends for the future of pediatric medicine, researchers are already advocating that health care providers need to reach beyond the hospital to intensify efforts in urging families to use community and social services, such as Ronald McDonald Houses, as an intrinsic part of the family support system (Alexander et al., 1986). Summary The results of published studies confirm that the hospitalization of a child is a traumatic event for a mother and can often precipitate a situational crisis for the whole family. An examination of the coping strategies of mothers revealed that decreased uncertainty about their child's illness, decreased stress, and increased social support can assist mothers in coping with their child's hospitalization. There was

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some indication that a booklet could be effective in providing information and counseling in a convenient, low-cost manner. Since 1972, 100 Ronald McDonald Houses have been established to provide therapeutic milieus for mothers of hospitalized children. The work of this researcher was the first attempt at a self -management booklet to enhance the effect of the Ronald McDonald House for mothers.

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CHAPTER III METHODOLOGY This study was designed to determine whether a self -management booklet introduced to mothers at the Gainesville Ronald McDonald House could help them cope with having a hospitalized child. Of interest was the immediate impact of the booklet on four dimensions of the stress process that effect mothers of seriously or terminally ill children: uncertainty about their child's illness, perception of social support from family, social support from friends, and stress (strain). Described in this chapter is the design of the study, the population and sample, procedures, treatment, instruments, research hypotheses, and data analyses of the study. Design of the Study A pretest-posttest design (Ary, Jacobs, & Razavieh,1979) as illustrated in Figure 3-1, was used in this study. The first 30 mothers, meeting the sampling criteria, who registered at the Ronald McDonald House, formed the control group. After all of these mothers completed the study, the next 30 mothers who registered and met the sampling criteria received the treatment. This quasi -experimental design was utilized because of the potential problem of contamination if a random sample of only some of the mothers in the residential facility 55

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(30C) 01 02 03 04 Tc 01 02 03 04 (30E) 01 02 03 04 Tl 01 02 03 04 30C = 30 control subjects 30E = 30 experimental subjects 01 = Uncertainty in Illness Scale--Parent/Child Form 02 = Perceived Social Support from Friends Scale 03 = Perceived Social Support from Family Scale 04 = The Strain Questionnaire TC = Control, Ronald McDonald House only Tl = Receive the self -management booklet Mothers Know Best while at Ronald McDonald House Figure 3-1 Experimental design for study

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57 were receiving the treatment. The temptation to share the treatment with a nontreatment mother would be great. This design separated the treatment and control groups, preventing contamination. Population and Sample The population studied were mothers who stayed at a residential facility--the Gainesville, Florida, Ronald McDonald House--a "homeaway -from -home" for families with hospitalized children. This population consisted of mothers who were under stress, due to the nature of their child's illness, the separation anxiety of being away from home, and anxiety at not being able to spend nights at the child's bedside. The population sample consisted of English-speaking mothers, with a minimum ninth-grade education, staying at the Gainesville, Florida, Ronald McDonald House for a minimum of 7 days. The children of these women were being treated at Shands Hospital, a tertiary care center at the University of Florida. This population closely resembled the characteristics of 340 parents who stayed at the Ronald McDonald House and who completed and returned surveys in 1985 for an earlier pilot study (Small, 1985b). The survey was conducted by this researcher in her capacity as a doctoral student in counselor education, as a licensed mental health counselor in the pediatric division of the Department of Social Work Services of Shands Hospital, as a member of the Ronald McDonald House Board of Directors (fund-raising, decorating, and operations committees), and as the pediatric liaison between Shands Hospital and the Ronald McDonald House. The pilot study (Small, 1985b) had revealed a number of issues relevant for producing and evaluating an intervention for decreasing

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58 stress in mothers. Mothers usually stay at Ronald McDonald Houses because they live too far from the hospital to commute daily and because they cannot spend the night with their child in a restricted or isolated unit such as the newborn intensive care unit, the burn unit, the pediatric intensive care unit, or the bone marrow transplant unit. Presented in Table A-1 (Appendix A) are the characteristics of the residents of the Ronald McDonald House and their responses to the 1985 survey items. Of particular interest, relevant to social support at the Ronald McDonald House, was the fact that up to 2 years after leaving the Ronald McDonald House, parents reported maintaining a contact made while at the House. Also, 21% of the respondents reported that they perceived another parent as the person they would go to at the Ronald McDonald House if they had a personal problem. A review by the researcher of recent Ronald McDonald House statistics revealed that as of February, 1987, the average stay was 6.1 days. Although children are going home from the hospital "sicker and quicker" due to cost containment, use of sophisticated medical procedures, such as bone marrow transplants, mean extended stays at the Ronald McDonald House for some families. All possible participants for the current study were identified through the Shands Hospital admissions office, where mothers register to stay at the Ronald McDonald House on a first-come, first-served basis. Mothers at the Ronald McDonald House are anxious to be with their children as much as possible. Therefore, for the mother's convenience, data were collected at the hospital. The sensitive nature of this research (mothers with seriously or terminally ill children in very restricted areas of the hospital)

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59 necessitated this study being carried out alone by the researcher who has a counseling background, has a knowledge of hospital protocol and infection control techniques, and has access to Ronald McDonald House mothers. None of the subjects had met the researcher before being asked to participate in the study. The data collection period to obtain 60 subjects (30 control and 30 experimental) was from February 24, 1987 to June 7, 1987. Although the nature of the study prevented random selection of subjects, there were close similarities between the control and treatment groups in terms of demographic variables. The mothers ranged in age from 19-52 years with the control group mothers having a mean of 31.60 years of age and the treatment group 29.80. Although the mothers' range of years of education was 9 to 17 years, the mean years of education was 13.30 in the control group and 12.7 in the treatment group. Mothers in the control group came a mean of 197.60 miles from home and in the treatment group 177.60 miles from home. The mean age of the sick child in the control group was 6.50 years and in the treatment group was 5.20 years. The children of mothers in the control group had a mean of 1.36 siblings and in the treatment group a mean of 1.03 siblings. The summary statistics of the variables are located in Table 3-1. Procedures Control Group Within approximately 48 hours of registering at the Ronald McDonald House, 30 eligible mothers were approached at the child's bedside by the

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60 Table 3-1 Summary Statistics of the Mothers' Characteristics Variable Total (n = 59) Control (n = 30) Treatment (n = 29)* Race Black 8 White 51 Marital Status Married 50 Divorced 1 Single 6 Separated 2 At RMH Before 15 Deaths During Study 2 Adopted Children 3 Transferred from Other 9 Hospitals Reason for Current Hospital ization Medical 27 Surgical 24 Diagnostic 8 Child's Diagnosis Malignant tumor 14 Nonmalignant tumor 2 Lymphatic cancer 4 Cystic fibrosis 5 Neurological disorder 6 Cardiac malformation 16 Gastrointestinal 3 abnormal ity Respiratory abnormality 5 Another diagnosis/burns, 4 spinal cord injuries 5 25 25 1 3 1 7 1 1 4 14 12 4 9 1 2 4 3 9 0 3 26 25 0 3 1 8 1 2 5 13 12 4 5 1 2 1 3 7 3 4 3 *One mother failed to provide data.

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61 researcher and asked to participate in this study. The first 30 mothers who agreed to participate formed the control group. After verbal consent was received from each mother, demographic information "A" (Appendix B) was collected and each mother received a coded packet of four questionnaires printed on machine-read forms. Although instructions were printed on the instrument form, instructions were reviewed with each subject and assistance was given, when necessary, in filling out forms. This was done to facilitate the procedural aspect of the study and to determine literacy of mothers. The forms were (a) the Uncertainty in Illness Scale--Parent/Child Form, (b) the Social Support from Friends Scale, (c) the Social Support from Family Scale, and (d) the Strain Questionnaire. All subjects were advised that information would be kept confidential and that the researcher would be the only person to have access to identifying information. The 30 control group mothers had private rooms in the Ronald McDonald House and spent their days at Shands Hospital with their sick children who were receiving appropriate patient services. Seven days after registering at the Ronald McDonald House, mothers received a second set of the questionnaires which were administered in the same manner as the first set. Demographic information "B" (Appendix B) was also collected at this time. Due to the vulnerability of mothers undergoing life-threatening experiences with their children, the researcher followed the administration of the posttest questionnaires by counseling the subjects on any topics of particular concern to them.

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62 Experimental Group When all the data had been collected from the control group, 30 eligible mothers were obtained in the same manner for the experimental group. The final treatment group sample consisted of 29 mothers as number 30 did not complete the study when her child was discharged prior to the seventh day. Demographic data "A" were gathered and coded packets of the four questionnaires were administered to the mothers. Mothers in the experimental group were given a copy of a self -management booklet Mothers Know Best (advice from mothers who have stayed at the Ronald McDonald House) and asked to read the suggestions and to follow them. To assure that mothers read the booklet, they were asked to write responses to the booklet's suggestions in designated places in the booklet itself (Anthony & Carkhuff, 1976). The mothers in the experimental group also had private rooms at the Ronald McDonald House and spent their days with their children at Shands Hospital. Seven days after administration of the questionnaires and receiving the booklet, a second set of the questionnaires were completed by the subjects and returned to the researcher. At the time the questionnaires were completed and returned to the researcher, demographic information "B" was gathered and the booklet was collected. As with the control group, if desired, subjects received counseling on particular concerns at this time. The booklet was then checked to see if the subject had written in the booklet as directed. The number of entries the mother addressed concerning uncertainty about the child's illness, social support, and stress were recorded. The booklet was then photocopied and the original returned to the subject to keep.

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The University of Florida Health Center Institutional Review Board determined that it was not necessary to obtain informed consent from the subjects for this study as they viewed willingness to participate as implied consent. Mothers were assured that participation was confidential, and voluntary, and was not a patient charge. This project received the approval of Hon. Maurice Giunta, President, Friends of Ronald McDonald House, Inc.; Dr. Ian Burr, Chairman, Department of Pediatrics, University of Florida College of Medicine; Jodi Mansfield, Shands Hospital Vice-President of Operations; Jerald Mitchell, Shands Hospital Director of Ancillary Services; and Susan Fort, Director, Shands Hospital Department of Social Work Services. One hundred fifty children's physicians at Shands Hospital were also notified of the project. Treatment Variables and Instruments This study had one independent treatment variable with two levels: (a) control which involved no treatment and (b) experimental which was the self -management booklet. The treatment consisted of receiving and using Mothers Know Best a self -management booklet, for 7 days. The booklet was designed to help mothers cope by structuring their current coping strategies. The booklet guided mothers to organize and ask the questions they had about their child's illness (increase information), to take actions to preserve their own well-being (preserve health), and to take the initiative to meet other parents at the Ronald McDonald House (increase social support). A booklet format was chosen as the form of intervention because of the convenience of use, its cost-effectiveness, and its potential to be

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64 disseminated and used in the other Ronald McDonald Houses. The booklet distributed to the experimental group was written by the present investigator as part of this doctoral research project. It incorporated 10 years of counseling experience with the population being studied and 7 years of association with Ronald McDonald Houses in several major capacities. The booklet was based on the observation that even highly educated mothers report that they often become disorganized, isolated, and stressed when their child is seriously ill. The booklet was designed to be a structured, self-directed process that assists mothers in organizing coping efforts. The reading level of the booklet is approximately seventh to eighth grade as assigned by the McLaughlin SMOG Vocabulary Test which predicts grade level difficulty of a passage within 1.5 grades in 68% of the passages tested (Doak, Doak, & Root, 1985). According to Pichert and El am (1985), the SMOG formula is as good as any, and was recommended by the U.S. Department of Health and Human Services for their 1981 book on communication with cancer patients. Although the Ronald McDonald House intervention booklet was intended for women with a minimum of a ninthgrade education, the reading level was maintained at an approximate seventhto eighth-grade level as a result of the Norfolk study of 100 samples of patient education materials wherein even patients who stated they were high school graduates had, on the average, a seventh-grade word recognition level (Doak et al 1985). After initial development, the first form of the booklet was rated by a panel of seven experts for appropriateness of format, vocabulary level, clarity of presentation of ideas, overall design, accuracy of

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65 information presented, and value as a teaching tool for stressed mothers. The panel consisted of a Ronald McDonald House coordinator, a professor of counselor education, a professor of clinical psychology, a pediatric intensive care social worker closely involved with the parents at the Ronald McDonald House, a pediatrician, a graduate student in media, and a doctoral -level professional in media production. Raters were asked to rate each aspect (format, vocabulary, ideas, design, accuracy, and value) on a 5-point Likert scale (excellent = 5 to poor = 1). The overall mean score for the booklet was 4.1. The booklet was then piloted with 15 mothers of hospitalized children and given a good to excellent rating. The final form was then constructed using suggestions of the panel of experts and mothers (Appendix C). Dependent Variables There were four dependent variables in this study thought to mediate coping: (a) uncertainty about the child's illness, (b) social support from family, (c) social support from friends, and (d) stress (strain). In this study the term stress (strain) was used to discuss the concept of stress. To measure these variables, the subjects were asked, within approximately 48 hours of admission to the Ronald McDonald House and again 7 days later, to answer a total of 119 items on four questionnaires which covered uncertainty about the child's illness, strain, and social support from family and friends. The questionnaires assessing uncertainty, social support from family and friends, and stress (strain) were all used with the permission of their authors.

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66 Uncertainty The Parent-Child Uncertainty in Illness Scale (PCUS) (Mishel, 1982) was used to measure parents' perceptions of uncertainty concerning their hospitalized child. This instrument is also called the Parents' Perception of Uncertainty Scale, but is referred to as the PCUS in this study. The PCUS is a 31-item, self-report, paper-and-pencil test in which uncertainty is conceptualized as a syndrome of ambiguity, lack of clarity, lack of information, and unpredictability. Perceived uncertainty, a judgment about an event or situation, was identified as one of the conditions contributing to a stress response in adult patients (Mishel, 1981). The PCUS was developed by Mishel to measure this perceptual variable believed to influence parents' responses to their child's illness and hospitalization. The PCUS is composed of four subscales (ambiguity, lack of clarity, lack of information, and unpredictability) plus the total score for the scale. Respondents are asked to mark items regarding how they are feeling about their child today, on a 5-point Likert scale of agreement from strongly agree to strongly disagree. Responses are assigned numerical equivalents (1-5) and summed to obtain a total score. Scores on four subscales are derived from answers to four subsets of questions. Thirteen questions address ambiguity, such as "It is difficult to know if the treatments or medications my child is getting are helping" and "It is vague to me how I will manage the care of my child after he/she leaves the hospital." Nine questions cover lack of clarity, such as "The explanations they give about my child seem hazy" and "The doctors and nurses use everyday language so I can understand what they are

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67 saying." Five questions cover lack of information, such as "I don't know what is wrong with my child" and "My child's treatment is too complex to figure out." Unpredictability is obtained by adding the scores on subjects' responses to four items such as "I usually know if my child will have a good or bad day" and "My child's physical distress is predictable. I know when it is going to get better or worse." To assess parents' perception of uncertainty, Mishel (1983) adapted the Mishel Uncertainty in Illness Scale (MUIS) and administered it to 272 parents of hospitalized children. A large number (n = 218) were mothers, probably because data collection occurred during the afternoon hours. All parents were high school graduates. Following item analysis, the data were subject to factor analysis. For the total scale, the standardized alpha was .91. Ambiguity had an alpha of .87, lack of clarity had an alpha of .81, lack of information had an alpha of .73, and unpredictability had a standardized alpha of .72. The reliability of the scale was determined using four estimates of internal consistency: coefficient alpha, coefficient theta, item subscale, and subscale-subscale correlations. As this was a new scale, the criterion level used for coefficient alpha was .70 or above. Coefficient theta was also used as a reliability estimate because theta provides reliability coefficients based on factor analysis with the potential for overcoming the limitations associated with alpha reliability. The overall findings concerning reliability indicate that the subscales are internally consistent. Although this was a relatively new tool, the initial findings indicated that this tool provided a means for evaluating the perception of uncertainty in one person concerning a significant other.

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Social Support The Perceived Social Support from Family (PSS-Fa) and Perceived Support from Friends (PSS-Fa) scales, by Procidano and Heller (1983), were used as measures of social support. Perceived social support refers to the impact networks have on the individual and can be defined as the extent to which an individual believes that his/her needs for support, information, and feedback are fulfilled (Procidano & Heller, 1983). Each 20-item scale in the PSS-Fa and the PSS-Fr consists of statements to which the individual answers "yes," "no," or "don't know." The response indicative of perceived support is a +1. The scores are the sum of the responses and range from 1-20. "I rely on my family for emotional support" and "My friends are good at helping me solve problems" are examples from the scales. Measures of perceived social support from family (PSS-Fa) and from friends (PSS-Fr) were developed and validated using a population of over 200 students. The PSS-Fr and PSS-Fa proved to be homogeneous measures with Cronbach's alpha coefficients of .88 and .90. Construct validity was shown using the same sample and the authors report that both PSS-Fa and PSS-Fr were negatively related to symptoms as measured by the Langner screening instrument. The PSS-Fr was positively related to social assets as measured by the California Psychological Inventory and the Dating and Assertion Questionnaire. The PSS-Fr was found to be negatively related to psychopathology as measured by the psychasthenia and schizophrenia scales of the short form Minnesota Multiphasic Personality Inventory (MMPI), while the PSS-Fa was negatively related to depression, psychasthenia, and schizophrenia scales (Procidano & Heller, 1983).

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69 Stress (Strain) Stress was measured by use of the Strain Questionnaire (SQ) (Lefebvre & Sandford, 1985). The development of the SQ was guided by the conceptualization of stress (strain) as a syndrome of physical, behavioral, and cognitive symptoms that are elicited, to varying degrees, by environmental demands upon the individual. The stress syndrome is relatively independent of concomitant emotional states (e.g., anxiety, depression), and is not severe or chronic enough to have resulted in clinical diagnosis. The respondent for this 48-item, self-report, paper-and-pencil test is asked to rate how many times in the last week they experienced each of the 48 physical, cognitive, and behavioral symptoms on a frequency scale of never to every day. Responses are assigned numerical values of 1-5 and are summed for each of the three subscales and then totaled for an overall strain score. The higher the score, the greater the level of strain. Physical signs of strain, such as pain in heart or chest and headaches, are addressed by 28 questions. Behavioral symptoms, such as impulsive behavior and inability to sit still, are covered by 12 questions. Cognitive symptoms, such as believing the world is against you and feeling out of control, are assessed by 8 questions. LeFebvre and Sandford (1985) have reported initial reliability and validity studies on the SQ based on a total of 412 subjects including undergraduate and graduate students, teachers, engineers, and insurance agents of both sexes. Alpha coefficients were reported to be .71 for the behavioral subscale, .86 for the the cognitive subscale, and .92 for the physical subscale. The full scale had an alpha coefficient of .94.

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70 Reliability tests included internal consistency and test-retest over a period of 1 month. Test-retest reliabilities were .73 for the cognitive subscale, .75 for the physical subscale, and .77 for the behavioral subscale. Using a sample of 48 business students, Lefebvre and Sandford (1985) established concurrent validity. Correlations between the SQ, its three subscales, and the Beck Depression Inventory (BDI) were significant ranging from .63 to .78. These data indicate a moderate degree of shared variance by the two instruments which is primarily attributable to the overlap of cognitive symptoms. Discriminant validity was determined by comparing subgroups of the sample who were under stress with subgroups who were not when they completed the SQ. The nonstressed group scored significantly lower than the other subgroups for the SQ and the cognitive and behavioral subscales. On the physical subscale, one of the stressed groups and the nonstressed group scored lower than the other three stressed groups. Behavioral subscale items present the most inconsistent findings of these studies, as behaviors such as prescription drug use may be due to the presence of a chronic medical condition rather than a result of stress. While it was being researched, the SQ was one of the few brief, self-report instruments available to measure stress which had empirical evidence of being reliable and valid. Lefebvre and Sandford encourage the use of the SQ in clinical settings to identify specific stress symptoms and suggest intervention strategies.

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71 Research Hypotheses The researcher posed the following null hypotheses: 1. There is no significant difference in levels of uncertainty, after a 7-day stay, between mothers at the Ronald McDonald House who receive a self -management booklet and those who do not. 2. There is no significant difference in levels of social support from family, after a 7-day stay, between mothers at the Ronald McDonald House who receive a self -management booklet and those who do not. 3. There is no significant difference in levels of social support from friends, after a 7-day stay, between mothers at the Ronald McDonald House who receive a sel f -management booklet and those who do not. 4. There is no significant difference in levels of stress (strain), after a 7-day stay, between mothers at the Ronald McDonald House who receive a self -management booklet and those who do not. Data Analyses Descriptive statistics were used to describe the sample on each of the demographic variables. All four research questions and hypotheses were answered utilizing an analysis of covariance. The pretest scores on each dependent measure were utilized as a covariate in order to adjust the posttest scores for any variation between the two groups prior to treatment. The adjusted posttest scores for the experimental group were then compared with the scores of the control group to determine if they were significantly different (£<.05). In all cases the analysis of covariance model was shown to be significant (fi<.0001) and the linear relationship between the pretest and posttest scores was

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also shown to be significant (fi<.0001). A t test was utilized for comparison of the two groups.

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CHAPTER IV RESULTS The purpose of this study was to explore the effect of a sel f -management intervention on levels of uncertainty, perceived social support, and stress in mothers of hospitalized children while the mothers were registered at the Gainesville, Florida, Ronald McDonald House. The research sample, the results of the analysis of covariance used to test the hypotheses that the intervention booklet will lower uncertainty and stress and increase social support from family and friends, and a summary of the results are described in this chapter. Description of the Sample Every eligible parent approached for this study agreed to participate and 15,307 items of information were collected from 59 mothers. Summarized in Table 4-1 are the means, standard deviations, and ranges of scores on the four dependent variables for the total sample. From pretest to posttest (1 week) the mean scores for the total sample decreased for uncertainty from 87.66 to 84.49 and decreased for strain from 91.24 to 84.71. In contrast, mean social support from family and social support from friends increased during that same period from 14.71 to 14.88 and 13.80 to 14.36, respectively. None of these changes were statistically significant. 73

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74 Table 4-1 Pretest and Posttest Means, Standard Deviations, and Ranges of Scores for Dependent Variables for Total Population Variable Mean SD Range Uncertainty Pretest 87.66 15.33 86.00 Posttest 84.49 14.89 74.00 Social Support, Family Pretest 14.71 5.30 19.00 Posttest 14.88 5.89 20.00 Social Support, Friends Pretest 13.80 4.94 19.00 Posttest 14.36 5.16 18.00 Stress Pretest Posttest 91.24 84.71 27.57 28.51 110.00 103.00

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75 Testing the Null Hypothesis In this study four null hypotheses were proposed which examined the effects of a self -management intervention on (a) uncertainty, (b) social support from family, (c) social support from friends, and (d) strain of mothers of hospitalized children. An analysis of covariance was used to compare the adjusted posttest means of the control and treatment groups for the four dependent variables and their subscales (Huck, 1974). Uncertainty Hypothesis 1--There is no significant difference in levels of uncertainty, after a 7-day stay, between mothers at the Ronald McDonald House who receive a self -management booklet and those who do not. To test the effect of the intervention booklet Mothers Know Best on uncertainty, an analysis of covariance was performed on the dependent variable uncertainty, using the pretest of uncertainty as a covariate. The means and standard deviations of each group's uncertainty scores are shown in Table 4-2. The source table of this analysis of uncertainty, and of separate analyses for each subscale (ambiguity, lack of clarity, lack of information, and unpredictability), are presented in Table 4-3. For the total scale of uncertainty, the analysis of covariance was performed with an obtained F = 5.68. and fi = .0205. Since the F ratio of 5.68 for uncertainty was significant at the .05 level, this null hypothesis could be rejected. For the uncertainty subscale of ambiguity, the analysis of covariance was performed with an obtained F = 6.46 and a fi < .0001. The F ratio of 6.46 was significant. For the other three subscales, however--lack of clarity, lack of information.

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76 Table 4-2 Pretest and Posttest Means and Standard Deviations for Total Scores and Subscales of Uncertainty Control Treatment Variable Mean SD Mean SD Uncertainty Total Pretest 85.43 16.50 89.97 13.95 Posttest 85.60 15.53 83.34 14.38 Ambiguity Subscore Pretest 37.73 8.92 39.45 7.40 Posttest 37.63 9.15 35.31 7.15 Clarity Subscore Pretest 23.30 5.15 24.31 3.91 Posttest 23.93 4.85 23.45 4.15 Information Subscore Pretest 11.10 3.10 12.79 3.70 Posttest 10.83 2.48 12.03 3.52 Unpredictability Subscore Pretest 13.30 2.93 13.41 2.64 Posttest 13.20 2.76 12.55 3.11

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77 Table 4-3 Source Table for Analysis of Covariance of Uncertainty Source df MS £ Group Uncertainty 1 480.98 5.68 .0205 Within Total 56 58 84.61 Group Ambiguity 1 191.24 6.46 .0001 Within Total 56 58 29.64 Group Clarity 1 17.73 1.39 .2433 Within Total 56 58 12.75 Group Information 1 .012 .00 .9547 Within Total 56 58 3.72 Group Unpredictability 1 7.80 1.58 .2143 Within Total 56 58 4.94

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78 and unpredictability-the F ratio was not significant. Inspection of the means revealed that the treatment group had significantly lower levels of uncertainty and ambiguity than the control group after using the booklet Mothers Know Best Social Support from Family Hypothesis 2--There is no significant difference in levels of social support from family, after a 7-day stay, between mothers at the Ronald McDonald House who receive a self -management booklet and those who do not. The hypothesis pertaining to social support from family was also tested using an analysis of covariance, with the pretest scores on perceived support as the covariate. The mean levels of the perceived social support from family are listed in Table 4-4 and the source table of this analysis is located in Table 4-5. The analysis of covariance was performed with an obtained F = .00012 and a £ < .9913. Since the F ratio of .00012 was not significant at the .05 level, there was not a significant difference between the control and treatment groups, and this null hypothesis could not be rejected. In summary, the analysis of covariance indicated that social support from family did not change significantly with the treatment. Social Support from Friends Hypothesis 3--There is no significant difference in levels of social support from friends, after a 7-day stay, between mothers at the

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Table 4-4 Pretest and Posttest Means and Standard Deviations for Scores on Social Support from Family and Social Support from Friends Control Treatment Variable Mean SD Mean SD Social Support, Family Pretest 14. ,77 5, ,24 14, .66 5. 47 Posttest 14, ,93 5, .74 14, .83 6. 14 Social Support, Friends Pretest 13, .57 5, ,05 14, .03 4. 91 Posttest 13, ,20 5, .44 15, .55 4. 64 Table 4-5 Source Table for Analysis of Covariance of Social Support from Family and Social Support from Friends Source df MS F fi Social Support Family Group Social Support, Fa 1 .0007 .00012 .9913 Within 56 6.07 Total 58 Social Support Friends Group Social Support, Fr 1 60.44 4.34 .0418 Within 56 13.93 Total 58

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80 Ronald McDonald House who receive a self -management booklet and those who do not. The hypothesis pertaining to social support from friends was also tested using an analysis of covariance with the pretest scores on perceived support as the covariate. The adjusted means of each group's perceived level of social support from friends is listed in Table 4-4. The source table of this analysis is located in Table 4-5. Examination of the means shows that perception of social support from friends increased for the treatment group while the control group level decreased slightly. The analysis of covariance was performed with an F value = 4.34 and a fi value = .0418. The F value of 4.34 was significant at the .05 level. Therefore, this null hypothesis could be rejected. In summary, the analysis of covariance and an examination of the means indicated that the treatment, the Mothers Know Best booklet, had a beneficial effect on mothers' levels of perceived support from friends. Stress (Strain) Hypothesis 4--There is no significant difference in levels of stress (strain), after a 7-day stay, between mothers at the Ronald McDonald House who receive a self -management booklet and those who do not. To test the effect of the intervention booklet Mothers Know Best on strain, an analysis of covariance was performed on the dependent variable, strain, using the pretest of strain as a covariate. The means of the strain scores are shown in Table 4-6. Results of this analysis

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81 of strain, and its subscales of physical, behavioral, and cognitive components of strain are presented in Table 4-7. The computed F value for effect due to strain was .01 with a e value of .9334. The physical, behavioral, and cognitive subscales did not have significant F ratios. Since the F values were not significant at the .05 level, Hypothesis 4 could not be rejected. Thus, analysis of covariance for stress indicated that posttest levels of stress (strain) were not significantly different for the treatment and control groups. Summary To summarize, four hypotheses that were tested using an analysis of covariance for each of the four dependent variables investigated in this study were discussed in this chapter. Significant differences between treatment and control group on adjusted posttest means for both uncertainty and social support from friends were found, with the levels of uncertainty significantly lower and the level of social support from friends significantly higher for the treatment group. Scores on social support from family and stress (strain) scores were not significantly different for the two groups. Within the construct of uncertainty, scores on the subscale ambiguity were also significantly lower for the treatment group. Thus, the self -management intervention Mothers Know Best did have a beneficial effect on mothers in the treatment group on the dimensions of uncertainty and social support from friends, but did not have a significant effect on social support from family or on stress (strain)

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Table 4-6 Pretest and Posttest Means and Standard Deviations for Scores on Stress (Strain) Measures Control Treatment Variable Mean SD Mean SD Stress (Strain) Pretest 89 .80 25 66 92 .72 29 .80 Posttest 83 .80 28 33 85 .66 29 .16 Physical Subscore Pretest 51 .80 15. 59 51 .90 19 01 Posttest 48 .40 17. 00 50 .38 19 35 Behavioral Subscore Pretest 20 .47 5. 83 22 .17 7 42 Posttest 19 .93 5. 85 20 .55 7 53 Cognitive Subscore Pretest 17 .53 8. 71 18 .66 7. 52 Posttest 15 47 7. 94 14 .72 6. 93

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83 Table 4-7 Source Table for Analysis of Covariance of Stress (Strain) Source df MS Group Stress (Strain) 1 2.58 .01 .9334 Within 56 366.21 Total 58 Group Physical 1 53.62 .32 .5710 Within 56 165.08 Total 58 Group Behavioral 1 8.68 .54 .4662 Within 56 16.12 Total 58 Group Cognitive 1 28.98 .88 .3535 Within 56 33.11 Total 58

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CHAPTER V DISCUSSION, CONCLUSIONS, AND RECOMMENDATIONS The purpose of this study was to determine if a self -management booklet for mothers staying at a Ronald McDonald House had an effect on the mothers' uncertainty about their child's illness, their social support from family and friends, and their stress (strain). The use of the booklet, while staying in the supportive atmosphere of the Ronald McDonald House, was the method of helping mothers to cope with the hospitalization of their child. The booklet was written with the underlying goal of promoting individual strengths and capabilities of mothers by encouraging them to take a proactive role in coping with the present hospitalization of their child. In the booklet the author addressed three coping patterns that, as shown by previous research, increase mothers' ability to manage life when a child has a chronic illness: maintaining well-being, maintaining social support, and understanding the medical situation (Figley & McCubbin, 1983). Presented in this chapter is a discussion of the research results and the limitations of the study, conclusions, and recommendations for future research on both the stress associated with the hospitalization of a child and on Ronald McDonald Houses. 84

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85 Discussion Total Population For the total study population, the status of the mothers showed a trend of improvement during the week they stayed in the supportive environment of the Ronald McDonald House. Their mean scores for uncertainty decreased from 87.66 to 84.49. Mean scores on social support from family increased from 14.71 to 14.88 and on social support from friends increased from 13.80 to 14.36. Stress mean scores decreased from 91.24 to 84.71. The changes in these scores, for the total population, were not statistically significant. Booklet Use The author wrote a booklet for mothers, bearing in mind that crisis intervention therapy is involved with solving the immediate problems facing the client (Aguilera & Messick, 1986). The self -management booklet given to the treatment group in this study encouraged mothers to ask questions about the medical problems afflicting their children in order to decrease maternal uncertainty. Mothers were also encouraged to take actions to promote their own emotional and physical well-being, and to make an effort to get to know other mothers at the Ronald McDonald House to increase their support. In order to help mothers focus global anxiety, and in order to determine whether they had used the booklet, mothers were encouraged to write in the booklet in spaces provided for their answers. Mothers were also asked to use the booklet in any other way that would be helpful to them. This problem-oriented activity was

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86 instituted to help mothers order their priorities and regain some balance in, and control over, their lives. Surprisingly, all but six mothers in the treatment group wrote in the booklet, in spite of the fact the booklet was introduced to mothers during the early adjustment period of their child's hospitalization. All subjects claimed to have read the booklet. The 23 mothers in the treatment group who wrote in the booklet entered a mean of 2.91 questions on uncertainty, 2.33 names of people met at the Ronald McDonald House, and 3.13 actions for reducing their stress. Individual mothers also used the booklets for recording names of physicians, telephone numbers, addresses of medical supply stores, visiting hours of restricted areas of the hospital, reactions to formula changes, times of medical procedures, suggestions for other mothers, a complaint about parent/physician communication, and an inspirational verse for parents of "special" children. Two subjects underlined booklets where the text acknowledged mothers' concern about their family at home and their feelings of guilt. One mother expressed gratitude for the booklet and felt its social support suggestions had been a major factor in her coping. Another mother admonished the researcher to be sure to return the booklet to her, as it was to go into a scrapbook. The six mothers who did not write in the booklet gave the following reasons: lost booklet, "burnout" after 7 months of hospitals, lack of interest, depression over a diagnosis of mental retardation, anxiety over a quadraplegic son, and resistance to reading anything but the Bible. The ready acceptance of this easily read booklet is consistent with the success in the Netherlands, where written communications have

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87 gained prominence in working with patients and their families (Visser, 1980) Uncertainty The analysis of covariance, and an examination of the means, showed that there was a significant decrease in the treatment group, compared with the control group, for the total uncertainty scale. This is most likely due to the self -management booklet because it had specifically addressed uncertainty. In Mothers Know Best mothers were advised to write in the booklet questions they had about their child's illness so they would remember to ask them when they saw the doctors. Within the subscales of uncertainty, there was a significant decrease in ambiguity. There was not a significant decrease for the subscales of lack of clarity, lack of information, and unpredictability. The ambiguity subscale had 6 disease-related and 7 diseaseand communication-related items. Thus, the ambiguity subscale had a total of 13 items. The clarity subscale had 9 items, lack of information had 5 items, and unpredictability had 4 items. The limited number of subscale items in the latter three subscales may account for the fact that the booklet had impact on ambiguity more than on the other subscales. Mishel's Parent/Child Uncertainty Scale (Mishel, 1983) is unique in that one person evaluates the uncertainty experienced concerning another person (i.e., a mother rates her uncertainty about her child). According to personal communication with Dr. Mishel, the current study was the first time the scale had been used as both a pretest and a

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88 posttest. The mean scores for the Gainesville total group pretest were 87.66 and for the posttest were 84.49. Comparing these to the mean score for the 410 parents on whom the Uncertainty Scale was normed, which was 78.76, both the Gainesville pretest and posttest means are significantly greater than Mishel's means (fi<.01 and fi<.05, respectively). Information was not available concerning the exact conditions under which Mishel's mothers were interviewed. The difference between Mishel's mothers and the Gainesville mothers could have been due to differences in the severity of the illness of the children, differences in the timing between hospital admission and test administration, and differences in education and medical sophistication of mothers. Social Support from Family Analysis of covariance for Procidano and Heller's (1983) Social Support from Family Scale showed there was no significant difference in the adjusted posttest scores between the control and the treatment groups. Perhaps it cannot be expected that intrinsic feelings of family support would be changed by a booklet over the course of 1 week. Mothers expressed definite feelings that they either had or did not have family support, depending on how demanding the mother, and her sick child, were on the family's resources. Despite the lack of significant differences in reported perceptions of social support from family, demographic data collected during the posttest revealed that the mean score of visits from family for the control group and treatment group was 3.43 and 5.59, respectively. This

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89 was significant (fi = .0038). The increase in family visitors in the treatment group could possibly have been an effect of the booklet which encouraged mothers to have their family visit them at the Ronald McDonald House. However, any inclination to generalize on family visits should be tempered by the realization that serious illness places grave economic restraints on most families. Lack of money for telephone calls and transportation could also have an effect on perceived family support. The control group had a mean of 6.60 calls to family while the treatment group had a mean of 5.21 calls to family. There is no statistically significant difference between these numbers. Although the booklet encouraged mothers to call home, not all mothers readily use telephones, nor did all mothers wish to maintain contact with home. Telephone calls home that elicited responses such as "Call us if he dies," "I hear he's retarded," and "Does a shunt mean my baby will never play football?", although they came from family, were not perceived as supportive by the mothers. It became apparent to the researcher that although the Social Support from Family instrument is concerned with family support, for the mothers in this study, at a traumatic time in their lives, the instrument was inadequate for measuring support from husbands. In discussions after the posttest, at least a dozen mothers reported having coalitions with family members other than husbands. Although 50 of the 59 mothers reported that they were married, mothers reported that their mates ranged from nothing more than a biological contributor to the conception of a child to being perceived as a mother's closest

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90 companion. Sixteen mothers reported they were closer to their mothers-in-law, the sick child, or other relatives, than to their husbands. These data are consistent with Penn's (1983) research about families of children with chronic illness forming coalitions. Although husbands could be nurturing and supportive to the women at the Ronald McDonald House, their presence was not necessarily perceived as support. They were sometimes viewed as detriments to the coping of mothers. Mothers stated that husbands could be supportive, loving men capable of managing the family at home. However, one husband threatened divorce and another used punishing behavior with his wife, such as forbidding telephone conversations with the children at home, when the mother chose to be with the sick child rather than with her husband. One mother expressed anger when the "prodigal," gift-laden father appeared at the hospital, after a year's absence, and proceeded to become the favorite, obeyed parent, while resurfacing all the pathological behavior that had caused the couple to separate. These anecdotal data are consistent with the research findings of Moos and Tsu (1977) that illness exacerbates any ills evident in the family system. For the mother reunited with her husband when the Red Cross brought him home on emergency leave from Germany and the mother whose husband stayed at the Ronald McDonald House and became involved in the care of their child for the first time in 8 years, the hospitalization of a child was a positive experience. Consistent with the work of Koocher and O'Malley (1981), every mother expressed the belief that the illness of her child had, in some way, changed her marriage or her relationship with the significant male in her life.

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Social Support from Friends The effect of social support from friends on mothers at the Gainesville Ronald McDonald House had been previously investigated in a pilot study (Small, 1985b). Other parents had been seen as supportive and, 2 years after leaving the Ronald McDonald House, 61% of the 340 parents who returned questionnaires reported that they maintained contacts made at the Ronald McDonald House. Mothers residing at the Ronald McDonald House have an opportunity to engage in two coping strategies that research has shown to be beneficial to people facing life crises: (a) the opportunity to discuss feelings and (b) contact with people who have faced similar life crises (Lehman et al 1986). Zarski et al (1986) reported that social interaction was consistently associated with high overall health and fewer somatic symptoms. It is of interest to note, that in the current research, the treatment group had a significant increase in perceived social support from friends, relative to the control group. Therefore, the intervention booklet Mothers Know Best further increased perception of social support from friends. Procidano and Heller (1983) found that perceived support led to greater disclosure to companions. Sympathy or empathy from similar others is a crucial condition for accepting coping assistance. Others who are experientially similar to a distressed individual are most likely to be perceived as empathic (Thoits, 1986). Some debate exists over whether support at the Ronald McDonald House is perceived or received. Perhaps the perception of support availability at the Ronald McDonald House allowed these self-reliant treatment group mothers to

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92 pursue the practical resolution of their problems and seek out social support. Stress (Strain) The results of this study did not show a significant difference between the control group and the treatment group on measures of stress, either on its total score or in any of its subscales. Thus, the booklet did not appear to have an effect on mothers' stress. Retrospectively, this might have been expected since mothers said their stress was dependent on a number of factors. In many cases, the primary factor appeared to be the severity of the child's illness. In other instances, the mother's current stress was related to stressors outside the hospital setting (e.g., diagnosis of cancer in mother's husband). In still other instances, coming to the hospital, in and of itself, appeared to increase or decrease mothers' stress. Clearly, the booklet could not have had an effect on these factors. However, interesting anecdotal information is linked to the very broad range of scores on this measure. On the physical subscale of the Strain Questionnaire (Lefebvre & Sandford, 1985), which had mean sample pretest and posttest scores of 51.84 and 49.37, respectively, three mothers scored over 90. One mother whose pretest score was 105 had been told upon admission from another hospital that her child could die from previous medical mismanagement. Two mothers who scored 96 and 106, respectively, on the posttest were told during the week of the study that their children had fatal illnesses. Additionally, for the cognitive subscale, the sample pretest and posttest means were 18.08 and

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93 15.10, respectively. Three mothers who had the lowest pretest and posttest scores (8) on the cognitive subscale were over 40 years of age, with one having been a foster mother to 23 children, pointing to the possibility that maturity and experience can have an effect on the cognitive subscale of stress. These low scores conflict with the findings of Frieberg (1972), wherein, all mothers reported uneasiness, even if specific frightening events had not occurred. Lefebvre and Sandford (1985) contended that the most inconsistent findings in the self-report Strain Questionnaire are the behavioral subscale scores. The anecdotal results from this study are consistent with that belief. For example, prescription drug use, one of the items in the behavioral subscale, may not be associated with stress, but could be the result of a chronic condition of the mother. Also, rules of the Ronald McDonald House prohibit use of alcohol in the house. It is highly unlikely that the 90% of the women who claimed no alcohol use were, in fact, abstainers from alcohol during the week before and during the week of the study. Thus, although participants in this research were all volunteers, their responses reflected self-protective behavior. One parent expressed a desire not to have further information about her child's leukemia because "my nerves can't take it and God will take care of everything." This is consistent with Folkman (1984) who asserted that forcing control can heighten stress. This same mother's unwillingness to acquire information and take control, however, led to misunderstanding and conflict between the mother and the medical personnel about responsibility for the child's cancer treatments.

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94 Limitations Attention must be paid to the limitations of this study. An examination of the research design and procedure reveals several threats to internal validity. Population mortality was a limitation. Originally, the study was designed with 30 subjects in the control group and 30 in the experimental group. Over the course of the period of data collection, pretests from 37 mothers were gathered in an effort to obtain the 30 subjects. In seven cases, medical reasons, such as cancellation of surgery, cancellation of a bone marrow transplant, transfer to a larger burn unit, referral to a hometown physician, etc., resulted in early discharge of mothers from the Ronald McDonald House. One mother in this group, uncomfortable with the rules of the Ronald McDonald House, chose to go to a motel. Differential selection of subjects was possible through the lack of randomization. This risk was taken in order to avoid contamination, which was viewed to be a greater threat to validity. Therefore, the treatment group of mothers were not approached to be in the study until the control group had completed the study. However, as discussed in chapter III, there were striking similarities between the mothers who made up the control and treatment groups. Another threat to internal validity was history. Anecdotal accounts of events that could have affected mothers' responses between the pretest and the posttest were loss of insurance coverage, repossession of household goods, loss of mate's job, a sibling suicide attempt, loss of mother's job, and loss of a reliable housekeeper. However, the occurrence of these events should have been randomly divided between the control and treatment groups. In

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addition, pretesting may have affected mothers' performance on the second test, regardless of the experimental treatment. The use of an identical pretest and posttest may have caused sensitization to the content of the treatment. Again, both the control and treatment groups should have been equally affected by this. The sample in this study was limited to one Ronald McDonald House. Thoughtful attention must be paid to the external validity of this experiment, to avoid the tendency to overgeneral ize these experimental findings to all mothers of hospitalized children based on the data from the Gainesville Ronald McDonald House. Two mothers who were not eligible and five fathers asked to participate in the study, which could indicate that the study had a halo effect. Conclusions Analysis of the research results of this study of mothers at the Ronald McDonald House reveals that the use of the booklet Mothers Know Best decreased mothers' uncertainty concerning their child's illness, especially its ambiguity component. The booklet also increased mothers' perception of their social support from friends. Overall, it can be concluded that the self -management intervention booklet Mothers Know Best, used as a treatment to help mothers at the Gainesville, Florida, Ronald McDonald House, was effective. Recommendations The high cost of medical care is necessitating shorter hospital stays for children as well as adults. By the year 2010, hospitals will

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96 have become, for all practical purposes, intensive care units (Freymann, 1986). Even now, mothers who register at Ronald McDonald Houses for a period as short as 1 week, have seriously ill children. Time and personnel are not always available to counsel mothers individually to use their strengths and capabilities and to take a proactive role in ascertaining what is happening medically to their children, to take actions to maintain their well-being while they are in the miasma of the hospital setting, and to facilitate their meeting potentially supportive mothers in similar situations. The use of a booklet to assist mothers is a time-efficient, cost-effective method of reaching every mother who registers at the Ronald McDonald House. The self -management intervention booklet used in the experiment at the Gainesville Ronald McDonald House was effective on two of four studied dimensions: uncertainty and social support from friends. The other two dimensions are less tractable. The following recommendations are made: (a) The booklet Mothers Know Best should be used at the Gainesville Ronald McDonald House, and (b) the booklet should be offered to all literate mothers, regardless of their length of stay, when they register and are oriented to the Ronald McDonald House. There are no data to prove whether the intervention used in this study would be effective in the other Ronald McDonald Houses. However, these facilities are all designed to house families in a friendly, safe, supportive, and inexpensive environment when families have seriously ill, hospitalized children. More than 1 million families have stayed at Ronald McDonald Houses. Since the majority of people who register at the Ronald McDonald House are mothers (Jones, 1986), it may be possible

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97 that thousands of women going through the ordeal of having a hospitalized child could benefit from using Mothers Know Best It would appear that use of the Gainesville intervention booklet Mothers Know Best in other Ronald McDonald Houses would be appropriate. Future Research The results of this study suggest areas for future research focused around the following topics: 1. Research on Mothers Know Best Further research could be conducted on the effectiveness of the booklet at Ronald McDonald Houses and comparable institutions. The booklet could also be modified and tested on grandmothers and fathers who come to the Ronald McDonald House as the main caretaker of the hospitalized child. Research could be conducted on the relative effectiveness of the booklet with black and white mothers. The researcher's experience at the Gainesville Ronald McDonald House pointed out the need for the booklet to be available in Spanish. Comparisons of the use of the booklet by mothers under age 30 and age 30 and over, as well as its use by high school and collegeeducated women may garner interesting data on coping in these groups. 2. Research on intercorrelations of the data from this study using the scales and subscales. Further analysis of these data might provide insight into the components of uncertainty, social support, and stress in families with hospitalized children. 3. Research on hospital staff/parent perception of severity of illness. A study of the relationship of a hospital staff member's perception of a child's condition on day of admission, 1 week later, and

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prediction for condition 1 year later, as related to the mother's perceptions at the same intervals, could provide insight into hospital/parent communication problems. 4. Research on the Gainesville, Florida, Ronald McDonald House. Future research might determine who benefits most from Ronald McDonald House use, in order to best utilize the limited number of rooms available. The effectiveness of the Ronald McDonald House might be enhanced by the introduction of exercise and relaxation classes for mothers who scored high on the physical subscale of the Strain Questionnaire. Research could also be conducted on the response of parents to the introduction of counseling opportunities within the setting of the Ronald McDonald House.

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APPENDIX A 1985 RONALD MCDONALD HOUSE SURVEY

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Table A-1 1985 Ronald McDonald House Survey Characteristics of the Population Sample Variable Category Percentage i^arexaKer parent Mother 82 (Respondent) r atner 18 Miles from home <25 1 2 DU/D 8 uver /b 81 uuL Or staie 8 Marital status Married 82 unmarr 1 eu 4 Divorced 11 Widow 1 No response 2 Parents in home Mother 97 Father 93 100

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Table A1-continued Variable Category Percentage Highest school grade 8th 9th-12th Jr. college College Other 2 44 18 27 9 Child's diagnosis by service Hematology/Oncol ogy 21 Cardiology/Card. Surgery 21 Neonatology/Birth Defects 11 Surgery 11 Neurology 7 Pulmonology 6 Nephrol ogy/Transpl ants 6 Infectious Disease 5 Gastroenterology 5 Ambiguous 5 Date of diagnosis Present hospitalization <6 months 6-12 months 1-3 years ago >3 years ago 10 8 16 43 22

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Table A-l--continued Variable Category Percentage Child's health at present Excellent 18 Good 36 Fair 27 Poor 6 Deceased 13 RMH room occupants* Mother 92 Father 81 Sibling 39 Grandmother 75 Length of stay at RMH 1-3 days 25 4-7 days 27 8-12 days 15 13-21 days 13 Over 21 days 20 Child's status Inpatient 87 Outpatient 4 Both 9

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Table A-l--continued Variable Category Percentage Contacts made at RMH maintained Yes 61 No 31 No answer 8 Problem solver at RMH Volunteer 5 Manager 40 Other parent 21 Hospital personnel 10 Other 7 No one at RMH 5 No one 12 Most memorable icaLuic ui r\nn oupport from others 48 Support to others 7 Quality of facility 14 Social 10 Other 21 *Note: Room occupancy is and two small children at limited to three people any one time. or two adults

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APPENDIX B DEMOGRAPHIC DATA

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Demographic Information A Your name Address City State Zip code Phone ( ) Your age Miles from home Name of child at Shands Age Date of Shands admission Hospital No. Names of other children who live with you: Age Your marital status: Unmarried Married Divorced Widow When your sick child is at home, who is the main caretaker? How many adults (21 and over) live in your house with you? What is the highest school grade you finished? What is your child's diagnosis? When was your child diagnosed? 105

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106 Demographic Information B Code # Including this time, how many days has your child been hospitalized at Shands? Have you made any phone calls in the past week? If so, about how many to home? to friends? to clergy? Have you had visitors from outside Gainesville in the past week? If so, how many family members? friends? clergy? If you had a personal problem at RMH, with whom would you discuss it? ***** Using the following scale, please tell us about your child's condition: Put a circle around your answers. Excellent = Feeling great. Able to physically and mentally keep up with his/her age group in most things. Good = Feeling good. If old enough, can attend school most of time. Fair = Up and around, but mostly stays at home. Poor = Bed-bound, unable to care for self, or not developing way he/she should. Very ill = Terminally ill or restricted life span. How was your child How is your How do you expect your a week ago? child today? child to be in a year? Excellent Excellent Excellent Good Good Good Fair Fair Fair Poor Poor Poor Very ill Very ill Very ill

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APPENDIX C INTERVENTION AND EVALUATION

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109 Your child's name Your RMH room number MOTHERS KNOW BEST Advice from mothers who have stayed at the Ronald McDonald House Keep this booklet with you to help you, your child, and your family during your stay at the Ronald McDonald House. MAY ALL WHO ENTER HERE FIND STRENGTH IN OUR FAMILY AND HOPE IN TOMORROW Welcome to the Ronald McDonald House! If you are like most mothers staying here, you are cilad to have an inexpensive, clean, comfortable room to stay in close to thJ hospital and your sick child. If you are like all of the mother! staying here tonight, you are concerned about your chUd's ilt.tll\ th^i^ children to'^^ave tests Some mothers worry about being away from the rest of 1-h^irfamily Some mothers are anxioul because they have never spe^t a ?:^ny'proTlems'"'^ ^^^^ worried 'about mon^e^, fJb^'o? Tu^^:?%X'.e'iii7r chnd%^c'^^^?ti"^^"'^^H"^ ^^^^ ii^Pslt'^V/k^.T^^^^^^^ whole^ tlli^'y upset When one of the children is hospftauTed ^""''^ ^'^^

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110 Many mothers find that when lots of things are happening at once, writing down feelings and thoughts and making lists of questions, ideas and people can be helpful. We hope this booklet will help make your life easier. Add any information to your booklet that helps you. The booklet is yours to keep! Think a moment: about how you are feeling right now. Put an X next to the words that describe how you feel. Glad Nervous Relaxed Sad Worried Happy Guilty Angry Frightened other (What are they?) Many parents find it hard to admit all their feelings, even to themselves. They may keep asking themselves and other people "Why my child, why me?". We wish we could answer that for you but we can't. Instead, we can only tell you that 5,000,000 yes, five million children will be hospitalized this year in the U.S. and their parents are asking the same questions you are asking. It can be frightening being a mother with a sick child far from family and friends. You may not feel very well yourself. You may feel depressed and lonesome and just want to be left alone Sometimes mothers of hospitalized children feel a deep sadness' as If no one cares. ^ ^auness. When you are feeling depressed and/or lonesome, would you rather be alone or with other people ? In the past, when you have been depressed and/or lonesome. what has helped you to feel better? ^ jr ^ cu xeex ^ n*.w ^ "^^^ "'^"y feelings, since being here may be a new experience for you, we want to help you cope with anv Itt/'^t^ ^k" ^^11 take a few minutJs, now, ?o read this booklet, what follows can help you with your child over one mill ion familjps havp .^.Y .H 4 th. inn about their hospitalized chilri. T hev t^n n s that l-h^r-^. iT I ^1 l!"!./!""!"..^"!!'^ ^" "'^^'^ ^""T P, YOUR FAMTr.V .Ifn^ vnM^^ 1. LEARN ABOUT YOUR CHILD'S ILLNESS 2. T HINK ABOUT YOURSELF 3. MEET OTHER PARENTS AT THE RONALD MCDONALD So^SE

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Ill Let's take them one at a time! ACTION #1: LEARN ABOUT YOUR CHILD'S ILLNESS The doctors and other care-givers want to help you understand your child's problem. In a busy hospital people may sometimes forget to tell you who they are and what they are doing for your child. They may even forget and use words you don't understand. Ask the medical staff any questions you have so you can help your child know what is happening. There is no such thing as a dumb or bad question. Take time now to write in your booklet a list of questions you have for the doctor about your child's illness, treatment, drug side-effects, home care, future care, etc., so you won't forget them when the doctors are around. Keep this booklet handy in your purse. Write down ANY questions you have about your child's illness Each day you may want to add new questions for the doctor When you get the answers. WRITE THEM DOWN so you won't forget them after you leave here. Use the extra page and the backs of pages for more space. For example: l. ffow long will mv child h a ve to stay in the hospital?

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112 ACTION #2 THINK ABOUT YOURSELF Even if you think you should be with your child all day, take time out of every day for yourself. Go eat a meal, find a quiet place, read a book, take a shower, get some exercise even if it is just walking around the hospital. A change of scenery can keep you from getting all kinds of aches from headaches to backaches. Mothers and children need time away from each other in the hospital just the way they do at home. You may think your health doesn't count right now, but if you get sick, who would be able to stay with your child? Sometimes talking to someone you care about is what you need most to help you to help yourself. Phone calls can make you and the people at home seem closer. The sound of someone you love, even when they are complaining, can sound good when you are far from home. If it can be arranged, have your family visit you at the Ronald McDonald House. right now, something you will do for yourself When you have done it, put a mark (x) next to it on Add to your list each day you are here. WRITE DOWN tomorrow your list. What I'll Do for Myse1f_ i pjd itl For example: ~ 1. Spend 15 minut es walking quickly from RMH to the hospital 2.

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113 ACTION #3 MEET OTHER PARENTS AT RONALD MCDONALD HOUSE If you have questions about the Ronald McDonald house, the staff and volunteers are happy to answer them. Speak to other people you see in the house. Don't wait to be introduced. We are like one big family here. Our parents find that they often feel less depressed and lonesome when they talk to each other. Remember, the other parents feel depressed and lonesome, too. A mother told us that the time here was the worst and best of her life. Her son was very sick while she was at RMH, but she made close friends who had sick children, too, and knew how she felt. These were friends who understood her worries and helped her feel good about herself as a mother. To help you remember the new friends you meet, WRITE DOWN the names (and addresses and phone numbers, if you want them) of people, as you meet them, at the Ronald McDonald House. Remember to use the page at the end if you need more space. For example: 1. Faye and ^ ^ ville, FL 32605. Telephone: (904) 374-4404 .^.;,7_^^-,^--f5*^ Managers, RMH, 1600 SW 14 St. Gaines3. ?7 57 67 7. 87 97 10.

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114 Mothers who have had a hospitalized child are the ones who can really help you cope during this difficult time. The mothers who were here before you strongly advise that you re-read this booklet and try out its suggestions. They think the hospitalization of your child will be easier for you if you LEARN ABOUT YOUR CHILD'S ILLNESS, THINK ABOUT YOURSELF, and MEET OTHER PARENTS AT THE RONALD MCDONALD HOUSE. ^HKCWib Ai The love of many people has built this house and keeps it going We hope the Ronald McDonald House will always have a special place in your memory and that here you will find STRENGTH IN OUR FAMILY and HOPE IN TOMORROW

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115 Evaluation Form for Intervention Booklet with Ratings (Mean Scores) of Seven Experts In 10 years of working with hospitalized children, I have found that even the most highly educated of their parents become disorganized and confused when their child is seriously ill. A global anxiety often overtakes parents and interferes with normal functioning at even an elementary level. Parents at the Ronald McDonald House report that they forget to ask the doctors questions, forget to eat, and forget the names of close friends they have made here. The booklet is designed to be kept in the child's mother's purse during her stay at the Ronald McDonald House. This is a rough draft of the finished booklet. DESIRED OUTCOME: Mothers will decrease uncertainty and stress and increase social support. ANTICIPATED BEHAVIOR CHANGE: Mothers will make lists of their questions for the doctors, make lists of activities they will do to increase their own stress while in the hospital, and make lists of friends met at the Ronald McDonald House. The booklet, designed for mothers with a high school education, is currently being field tested with mothers. Your suggestions and advice are welcome! Please read the booklet, fill out the form and return to me in the enclosed envelope. Thank you. Natalie Small

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Please use the following scale to rate the brochure: Excellent 5; Good 4; Average 3; Below average 2; Poor 1. Mean Score Rate the appropriateness of the booklet format. 4.4 Rate the vocabulary for high school level readers. 4.0 Rate the clarity of presentation of ideas. 4.0 Rate the overall design of the booklet. 3.9 Rate the accuracy of information presented. 4.4 Rate the value as a teaching tool for stressed mothers. 4.0 Total 4.1 Your name Title

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APPENDIX D INSTRUMENTS

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DIRECTIONS: USE Na 2 PENCO. ONLY ^MM m4 mOi tm ^bom otnt Hcti stit ~tttr rt. Tito tim aat tMnk : uys. Vmm blada^-ta ttm Ittar that mt dosaly auun* hw jna w fwllnf It your dilld TOMT If yon 19m irit* r stttMMti I yoi mhU bltctwH)!! ummr blMk *i* or If ^ou d1sarM vltli stiuant. tiMa tiliilM In wmmr ^iMk 'd or *.* If yom art iiiiiw cirlltf. tliai MiOw 1 aator biMk mTc* ntiM rt>oai to mry stataaat. ™>ATIM SCLE: (1) Strmfly Afr (b) AfTto \t\ Oil-,..(•) Stroavly Oli n i'M DATE MO AY [yeah I FACULTY ID N UMBER 0 ^u^g^ iC0U£Gl 0] I I I I I I j I j j I i I I I I0 '-0 I i Ill O CI i l j o COOlGIOOOOGOOOiGl0OOOh*' O SEX CLASS O o iQ I!;! O 1!! !""'^^ -" w 0"0 .l^^^^^s0 — O I!'! 01^ O -0l il@|-:-> C\-^ Ql T F 3 T F 2 T F 30 T F 1 T F 5 0 T F 50 T F 0 T F 30 T F 30 T F JZ0S •x£ T F ':0@ T F •3 0S T F i'0 T F 5 i'X T F I50S T F l'0 T F '3000 T F 190 T F 200 20000 f (PHASE READ OIRECTIONS ABOVE BEFORE STAKTIN6 THIS SURVEY) I don't knOM what is wrong with my child, r have < lot of questions without answers. I aa unsure If ny child's Illness is getting better or worse. It Is unclear hoM bad ny child's pain will be. The explanations they give about iiiy child seem hazy to me. 6. The purpose of each treatment for ay child is clear to me. 7. r do not know when to expect things will be done to my child. 3. Ny child's syaptoas continue to change unpredictably. 9. I understand everything explained to me. 10. The doctors say things to ne that could have many meanings. 11. I can predict how long lay child's illness will last. 12. Ny child's treataent is too coaplex to figure out. 13. It is difficult to know if the treatments or medications my child is getting are helping. 14. There are so many different types of staff, it's unclear who is responsible for what. 15. Because of the unpredlctaollity of y child's illness, I cannot plan for the future. 16. The course of my child's illness keeps changing. He/she has good and bad days. the^h^s^taf" "* ^'^^ 18. It is not clear what is going to happen to my child. 19. I usually know if my child Is going to have a good or bad day. 20. The results of my child's tests are inconsistent. 21. The effectiveness of the treatnt is undetermined. : I i o 1 0 22 It is difficult to determine how long it will be oefore I can care for my child by myself. I MAKK CORRECT PAG£ NUMMR HCBC (CORniME 0* OTKR SIDE) C 1 118

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119 23 T F 2*C T F T F T F T F T F 210 0(T ?3 T F 2900 2 :T ^ T F 30 00 2" 3 r T F "00 X T F 320 X X I X T F 3300000 T F 3000X T T F 35 0 0 0 T T F 300000 T F 3700000 T F /r\ /T\ ^ T F 31000 T F 3S00000 T F 000 00 T F Ai -T" ^ ^ ^ T F 000.00 T F 00000 T F "0000 0 T F 0X XXX 23. I can generally predict the course of my child's illness. 24. Because of the treatment, what ny child can do and cannot do keeos changing. 25. I'm certain they will not find anything else wrong with my child, 26. They have not given my child a specific diagnosis.. 27. child's physical distress is predictable, I know when it is going to get better or worse. 28. My child's diagnosis is definite and will not change. 29. I can depend on the nurses to be there when I need thea. 30. The seriousness of my child's illness has been determined. 31. The doctors and nurses use everyday language so I can understand what they are saying. Canrrl9ht0198Z by Merle Mstel. U. OF FLORIDA HEALTH CENTER FORM NUMBER 004-EVAL MARKING IMSTBUCnOKtS 1 USE A STANDARD NO 2 LEAO PENCIL 2. KEEP AU. MARKS WITmi TVIE BUBBLES 3 MAKE McAVY BLACK MARKS THAT RLL THE BUBBLE i M4KH NO STRAY MARKS ON THE ANSWER SHEET : 3= -JOT FOLC 5TAPU OR ATTACH CUPS TD THIS FORM r

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120 OIRECnONS: USE NO. 2 P€NC1L ONLY nm statanents which follow refer to feelings and experiences which occur to most people at one tine or another In • their relationships with friends. Rjr •each statenent there are three possible "Know. PlMse blacken-In the answer you "Choose for each Itae. DATE MO DAY j YEAS I c_ DIS | (2) (a) (0) (2)!(l>|(o) d) (?) (?) OOpOO0OOOOIOoo C ^ O *o o o FACULTY ID NUMBER 0 I ^umBER SEX Op-'O | v O .^|s^ !] (5 l-m_0 l I0 ;i l l 0. I ^ l l ,; i O O KD!:!-:::::;:^ O l|;|j<£,. o d I! !,-., n CLASS ^ O o, sO o T F 'X T F 2 T F 3 T F J T F i T F iS T F • T F 3 T F 5 T F 13 -r, T^-T (PUASE KM OWEaiOIS ABOVE BEFORE STARHNS THIS QUESHOIWAIRE) 1. My frtends give lae the moral support I need. 2. Host other people are closer to their friends than I an. 3. My friends enjoy hearing aoout what I think. 4. Certain fHends com to m when they have problems or need advice. 5. I rely on ny friends for emotional support. ]Li k; 1? to^Sserf!""" ' "^'^ "f^"^ i'y gotten a good idea about how to do something from -^• 20. I Wish my frtenos were much different. m as (COWnNUE WTH QUESnONMAIRE ON OTHER SIDE) — 3 I MAOK CORBECT PAGE NUMBER HERE Ti M m Oo;< '^PiC-:CS3a-3

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121 T F 2S0(5)0 T F T F 28 T F 230 T F :c T F 31 T F 220 T F 23 T F 34 T F 350 T F :s0 T F 37 T F :a0 T F 3S0 T F * T F • ~ X •2', I T F 30^ T F •"0 D PERCEIXQ) SOCIAL SUPPORT (PSS-Fa) QUESTIONIIAIRE The statements which follow refer to feelings and experiences which occur to most people at one time or another In their relationships with their families. For each statement there are three possible answers: (a) Yes, (b) No. or (c) Don't Know. 26. My faally gives ne the moral support I need. 27. I get good ideas about how to do things or make things from my family. 28. Most other people are closer to their family than I am. 29. When I confide in the members of my famtly who are closest to me, I get the idea that it makes them uncomfortable. 30. My family enjoys hearing about what I think. 31. Members of my family share many of my interests. 32. Certain members of my family come to me when they have problems or need advice. 33. I rely on my family for emotional support. 34. There is a member of my family I could go to if I were just feelino down, without feeling funny about it later. 35. My family and I are very open about what we think about things. 36. My family is sensitive to my personal needs. 37. Members of my family come to me for emotional support. 38. Members of my family are good at helping me solve problans. 39. r have a deep sharing relationship with a number of members of my 40. Members of my family get good Ideas about how to do things or make things from rae. 41. When I confide in members of ray family, it makes me uncomfortable. 42. Members of my family seek me out for companionship. 43. I think that my family feels that I'm good at helping them solve proo I fins 44. I don't have a relationship with a member of ray family that 1s as r *''"* PP'e's relationships with family members. _f5^I wish my family were rauch different. U. OF aORIDA HEALTH CENTER RDRM NUMBER 004-EVAL MARKING INSTRUCTIONS 1 USE A STANDARD NO. 2 LEAD PENCIL cOKUfCT ^ 3 '.;aKE heavy 3LACX MARKS THAT Flu THE BUBBU ^^WKJ^V MAKE NO STT1AY MARKS ON THE ANSWER SHEET .NCORRfCT ; 00 -JOT FOLD, STAPLE OR ATTACH CLIPS TO THIS FORM 0

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122 1 1^ If q|N( •2i 0 O O 10 It *i 13 4If. ^> a. (Vi Ti S . Ti 0 0 • 0 0 0 0 THE smm quEsnowmRE Please read Wie following 11st and blacken-in tfie number that most closely corresponds to how often in the past week you have experienced or felt each of the itens listed. Ose this rating scale: (1) Not at all {2)1 or 2 days (3) 3 or 4 days (4) 5 or 6 days (5) Everyday 1. backaches 2. nuscle soreness 3. nuflttness or tingling in body 4. heaviness in arms or legs 5. weakness in body parts 6. tense auscles 7. pain in neck a. nausea or upset stomach 9. diarrhea or indigestion 10. tiuht ^tr^h 11. loss of or excessive appetite 12. pain in heart or chest 13. shortness of breath 14. faintness. dizziness 15. racing heart 16. light headedness 17. headaches 18. hot or cold spells 19. luop in throat —20dryness n f throat and mouth 21. teeth grinding 22. trentling or nervous ties 23. sweating 24. sweaty hands 25. itching 26. cold or warn hands 27. frequent need to urinate 28. pre-flienstrual tension or aissed cycles 29. spent more time alone ~2iL irritabili^Y 31. impulsive behavior ~ 32. easily startled 33. stuttering/other speech dysfluencies 34. insoemla 35. inability to sit still 36. sanking 37. use of recreational drugs 38. use of prescription dnigs 39. use of alcohol -40— accident pmnunx^ ~T7 2. 3. 4. 5. 6. 7. 8. 9. 10. TTT 12. 13. 14. IS. 16. 17. 18. 19. 20. f f T T f r-r' 2 1 4 1 1 1 k V V 3 ii 0 i 0 'T • r. 0 ii 0 0 1 'T 7' 0 V 0 0 0 i i 4 r> l\ 7.-. (MmwiE w™ qUESTIOWIAIHE ON OTHER SIDE. PrmtM tn U S A. 3 b NtwinM Catnouft SatOT. imm.

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123 TWE STMm QUESnowmRE (continued) Rating Scale: (1) (2) (3) Not at all 1 or 2 days 3 or 4 days (4) 5 OP 6 days (5) Everyday 41. 42. 43. 44. 45. 46. 47. 48. believe Uie wrid is against you fee)1ni| out of control urge to cry or run aMy and hide feelfng^ of unreality feeling tliat you are no good inability to concentrate nlghtaures tlilnk tftlngs can't get any worse 41. 42. 43. 44. 45. 46. 47. 48. r I i 5> I i i II Cowrl9it1985 by LefeJwre and Sandford

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REFERENCES Ack, M. (1983). Psychosocial effects of illness, hospitalization, and surgery. Journal of the Association for the Care of Children's Health H, 132-136. Adams, D. (1979). Childhood malignancy: The psychosocial care of the child and his family Springfield, IL: Charles C. Thomas. Adams, D. (1984). Helping the dying child: Practical approaches for nonphysicians. In H. Wass & C. Corr (Eds.), Childhood and death (pp 95-111). New York: Hemisphere. Aguilera, D. C, & Messick, J. M. (1986). Crisis intervention: Theory and methodology Princeton, NJ: C. V. Mosby. Ahrons, C. (1981). The continuing coparental relationship between divorced spouses. American Journal of Orthopsychiatry 51, 415-427. Alexander, D., White, M., & Powell, G. (1986). Anxiety of non-rooming in parents of hospitalized children. Children's Health Care 15, 14 19. Allen, D., & Sipich, J. (1987). Developing a self-help brochure series: Costs and benefits. Journal of Counseling and Development 65, 257-258. Anthony, W. A., & Carkhuff, R. R. (1976). The art of health care: A handbook of psycholog ical first aid skills Amherst, MA: Human Resource Development Press. Ary, D., Jacobs, L., & Razavieh, A. (1979). Introduction to research in education. New York: Holt, Rinehart, & Winston. Astin, E. W. (1977). Self-reported fears of hospitalized and nonhospitalized children aged ten to twelve. Maternal -Child Nursing Journal 6, 17-24. Averill, J. P. (1973). Personal control over aversive stimuli and its relationship to stress. Psychological Bulletin 80, 286-303. 124

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125 Azarnoff, P., Bourque, L. B., Green, J. A., & Rakow, S. (1975). The preparation of children for hospitalization (National Institute of Mental Health Report). Los Angeles: University of California, Department of Pediatrics. Barbarin, 0. A., & Chesler, M. A. (1984). Coping as interpersonal strategy: Families with childhood cancer. Family Systems Medicine 2, 279-289. Barnes, C. M., Kenny, F. M., Call, T., & Reinhart, J. B. (1972). Measurement in management of anxiety in children for open-heart surgery. Pediatrics 49, 278-280. Billings, A. G., & Moos, R. H. (1981). The role of coping responses and social resources in attenuating the stress of life events. Journal of Behavioral Medicine 4, 139-157. Booth, R. (1983). Toward an understanding of loneliness. Social Work 28, 116-119. Brazelton, T. B. (1976). The emotional needs of children in health care settings. Clinical Proceedings Children's Hospital National Medical Center 23(8), 157-166. Brian, D. J., & Mac! ay, I. (1968). Controlled study of mothers and children in hospital. British Medical Journal 1, 278-280. Brodie, B. (1986). Yesterday, today, and tomorrow's pediatric world. Child Health Care 14, 168-173. Bruhn, J. G., & Philips, B. U. (1984). Measuring social support: A synthesis of current approaches. Journal of Behavioral Medicine 7, 151-169. ~ Bush, J. P., Melamed, B. G., Sheras, P. L., & Greenbaum, P. E. (1986). Mother-child patterns of coping with anticipatory medical stress. Health Psychology 5, 137-157. Calhoun, L., Selby, J., & King, E. (1976). Dealing with crisis: A guide to c ritical life problems Englewood Cliffs, NJ: PrenticeHall. Caplan, G. (1961). An approach to community mental health New York: Grune & Stratton. Chan, J., & Leff, P. (1982). Parenting the chronically ill child in the hospital: Issues and concerns. Journal of the Association for the Care of Children's Health 11, 9-16. Cobb, S. (1976). Social support as a modulator of life stress. Psychosomatic Medicine 38, 300-314.

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126 Colletta, N. (1981, April). The influence of support systems on the maternal behavior of voung mothers Paper presented at the Society for Research in Child Development Biennial Meeting, Boston, MA. Comaroff, J., & Maguire, P. (1981). Ambiguity and the search for meaning: Childhood leukemia in the modern clinical context. Social Sciences and Medicine 15, 115-123. Cox, T. (1980). Stress Baltimore, MD: University Park Press. Coyne, J. C, & DeLongis, A. (1986). Going beyond social support: The role of social relationships in adaptation. Journal of Consulting and Clinical Psychology 54, 454-460. Craft, M., Wyatt, N., & Sandell, B. (1985). Behavior and feeling changes in siblings of hospitalized children. Clinical Pediatrics 24, 374-378. Davis, F. (1963). Passage through crisis Indianapolis, IN: BobbsMerrill DeAngelis, C. (1986). The corporate medicine approach adversely affects the future of children's health care. Children's Health Care, 15, 4-5. Dearden, R. (1970). The psychiatric aspects of the case study sample. In M. Stacey (Ed.), Hospitals, children, and their families: The report of a pilot study (pp. 55-84). London: Routledge & Kegan Paul. Doak, C, Doak, L., & Root, J. (1985). Teaching patients with low literacy skills. Philadelphia: J. B. Lippincott. Earthrowl, B., & Stacey, M. (1977). Social class and children in hospital. Social Science and Medicine U, 83-88. Eckenrode, J. (1984). Impact of chronic and acute stressors on daily reports of mood. Journal of Personality and Social Psychology 46, Eisenberg, M. G., & Gilbert, B. M. (1978). Individual and family reaction to spinal cord injury: Some guidelines for treatment. In M. G. Eisenberg & J. A. Falconer (Eds.), Treatment of the spinal cord i".i"yed (pp. 3-17). Springfield, IL: Charles C. Thomas. Eiser, C. (1981). Psychological sequalae of brain tumours in childhood: A retrospective study. British Journal of Clinical Psychology 20, 35-38. Ellerton, M. L., Caty, S., & Ritchie, J. A. (1985). Helping young children master intrusive procedures through play. Children's Health Care 13, 167-173. = rj

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127 Erikson, E. H. (1950). Childhood and society New York: Norton. Evers-Kiebooms, G., & van der Berghe, H. (1979). Impact of genetic counseling: A review of published follow-up studies. Clinical Genetics 15, 465-474. Ewing, C. P. (1978). Crisis intervention as psychotherapy New York: Oxford University Press. Falvo, D., Woehlke, P., & Deichmann, J. (1980), Relationship of physician behavior to patient compliance. Patient Counseling and Health Education 2, 185-188. Ferrari, M. (1986). Perceptions of social support by parents of chronically ill versus healthy children. Children's Health Care 15, 26-31. Feuerstein, M., Labbe, E. E., & Kuczmierczyk, A. R. (1986). Health psychology: A psvchobiological oersoective New York: Plenum. Figley, C. R., & McCubbin, H. I. (1983). Stress and the family: Coping with catastrophe (Vol. 11). New York: Brunner/Mazel Fleming, R., Baum, A., Gisriel, M. M., & Gatchel R. J. (1982). Mediating influences on social support on stress at Three Mile Island. Journal of Human Stress 8, 14-22. Flynn, C, & Chalmer, J. (1980). The social and economic effects of the accident at Three Mile Island (NUREG/CR-1215) Washington, DC: U.S. Nuclear Regulatory Commission. Folkman, S. (1984). Personal control and stress and coping processes: A theoretical analysis. Journal of Personality and Social Psychology 46, 839-852. Folkman, S., & Lazarus, R. S. (1980). Coping in an adequately functioning middle-aged population. Journal of Health and Social Behavior 21, 219-239. Frears, L., & Schneider, J. (1981). Exploring loss and grief within a wholistic framework. Personnel and Guidance Journal 59, 341-345. Freymann, J. (1986). Swinging with the paradigm shift Unpublished manuscript, University of Connecticut School of Medicine, National Fund for Medical Education, and the Departments of Family Medicine and Health Care, Storrs. Frieberg, K. H. (1972). How parents react when their child is hospitalized. American Journal of Nursing 72, 1270-1272. Gofman, H., Buckman, W., & Schade, G. (1957). Parents' emotional responses to hospitalization. American Journal of Diseases of Children 93, 629-637. ~

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128 Goode, D. A. (1984). Presentation practices of a family with a deafblind, retarded daughter. Family Relations 33, 173-185. Gross, A. M., Stern, R. M., Levin, R. B., Dale, J., & Wojnilower, D. (1983). The effect of mother-child separation on the behavior of children experiencing a diagnostic medical procedure. Journal of Consulting and Clinical Psychology 51, 783-785. Halligan, F. (1983). Reactive depression and chronic illness: Counseling patients and their families. The Personnel and Guidance Journal, 66, 401-405. Hayes, V. E., & Knox, J. E. (1984). The experience of stress in parents of children hospitalized with long-term disabilities. Journal of Advanced Nursing 9, 333-341. Heller, K., Swindle, R. W., & Dusenbury, L. (1986). Component social support processes: Comments and integration. Journal of Consulting and Clinical Psychology 54, 460-470. Hendrick, S. (1981). Spinal cord injury: A special kind of loss. Personnel and Guidance Journal 59, 355-359. Holahan, C. L., & Moos, R. H. (1981). Social support and psychological distress: A longitudinal analysis. Journal of Abnormal Psychology 90, 365-370. Holmes, T. H., & Rahe, R. H. (1967). The social readjustment rating scale. Journal of Psychosomatic Research 11, 213-218. Huck, S. W., Cormier, W. H., & Bounds, W. G. (1974). Reading statistics and research New York: Harper & Row. Hymovich, D. C. (1976). Parents of sick children: Their needs and tasks. Pediatric Nursing 2, 9-13. Jacobson, G. (1980). New directions for mental health services: Crisis interventi on in the 1980s San Francisco: Jossey-Bass. Jones, B. (1986, May). The year of the 100th Ronald McDonald House Paper presented at the National Conference of Ronald McDonald Houses, Oak Brook, IL. Kaplan, D. M., Grobstein, R., & Smith, A. (1976). Predicting the impact of severe illness in families. Health and Social Work 1, 73Kaplan, D. M., Smith, A., Grobstein, R., & Fischman, S. E. (1976). Family mediation of stress. Social Work 18, 60-69. Kazak, A. E., & Marvin, R. S. (1984). Differences, difficulties, and adaptation: Stress and social networks in families with a handicapp child. Family Relations 33, 67-77.

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129 Kessler, E. R. (1969). A comparative analysis of distress among mothers of hospitalized twothrough four-year-old children and its relation to social class membership. Dissertation Abstracts International 30, 2771B. (University Microfilms No. 69-21215) Koch, C. R., Hermann, J., & Donaldson, M. H. (1974). Supportive care of the child with cancer and his family. Seminars in Oncology 1, 81-85. Koocher, G. P., & O'Malley, J. E. (1981). The Damocles syndrome: Psychosocial conseouences of surviving childhood cancer New York: McGraw-Hill. Kubistant, T. (1981). Resolutions of aloneness. Personnel and Guidance Journal 59, 429-432. Langford, W. (1961). The child in the pediatric hospital: Adaptation to illness and hospitalization. American Journal of Orthopsychiatry 31, 667-684. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and cooing New York: Springer. Lefebvre, R. C, & Sandford, S. L. (1985). A multi-modal questionnaire for stress. Journal of Human Stress 11, 69-75. Lehman, D. R., Ellard, J. H., & Wortman, C. B. (1986). Social support for the bereaved: Recipients' and providers' perspectives on what is helpful. Journal of Consulting and Clinical Psychology 54, 438-446. Lehman, E. J. (1975). The effects of rooming-in and anxiety on the behavior of preschool children during hospitalization and follow-up. Dissertation Abstracts International 36, 30528. (University Microfilms No. 75-27037) LeMasters, M., & DeFrain, J. (1983). Parenting in contemporary America (4th ed.). Homewood, IL: Dorsey Press. Levy, N. (1979). The chronically ill patient. Psychiatric Quarterly 51, 189-197. Lindemann, E. (1944). Symptomology and management of acute grief. American Journal of Psychiatry 101 141-148. Lippman-Hand, A., & Eraser, F. C. (1979). Genetic counsel ing--The postcounseling period: Parents' perceptions of uncertainty. American Journal of Medical Genetics 4, 51-71. Lord, R., & Schowalter, J. E. (1982). A ten-year comparison of fathers' and mothers' reactions toward their hospitalized adolescents. Children's Health Care 10, 87-89.

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130 Margalit, M. (1986). Mothers' perceptions of anxiety of their diabetic children. Developmental and Behavioral Pediatrics 7, 27-30. Mattson, A., & Weisberg, I. (1970). Behavioral reactions to minor illness in preschool children. Pediatrics 46 604-610. McBrian, R. (1981). Coaching clients to manage depression. Personnel and Guidance Journal 59, 429-432. McCubbin, H. I., & Figley, C. I. (1983). Stress and the family: Cooing with normative transitions (Vol. 1). New York: Brunner/Mazel Meadows, A. T., & Evans, E. A. (1976). Effects of chemotherapy on the central nervous system. Cancer, 37, 1079-1085. Melamed, B. G., & Bush, J. P. (1985). The role of the family in acute illness. In D. Turk & R. Kerns (Eds.), Health, illness, and families: A life span perspective (pp. 183-219). New York: Wiley. Melamed, B. G., Dearborn, M., & Small, N. (1981, August). Information acquisition in children undergoing medical procedures Paper presented at the meeting of the American Psychological Association, Los Angeles. Melamed, B. G., Robbins, R., Small, N., Fernandez, J., & Graves, S. (1980, August). Coping strategies in children undergoing surgery: The need to evaluate individual's predisposition to process preparatory information Paper presented at the meeting of the American Psychological Association, Montreal, Canada. Meng, A., & Zastowny, T. (1982). Preparation for hospitalization: A stress inoculation training program for parents and children. Maternal -Child Nursing Journal H, 87-94. Menke, E. (1981). School -aged children's perception of stress in the hospital. Children's Health Care 9, 80-86. Mishel, M. H. (1981). The measurement of uncertainty in illness. Nursing Research 30, 258-263. Mishel, M. H. (1982). A comparison of the individual uncertainty scale and the family member uncertainty scale Unpublished manuscript. University of Arizona, Tucson. Mishel, M. H. (1983). Parents' perception of uncertainty concerning their hospitalized child. Nursing Research 32, 324-330. Moos, R. H., & Tsu, V. D. (1977). Coping with physical illness New York: Plenum.

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131 National Center on Health Statistics. (1986). Utilization of shortstav hospitals in the United States in 1984 (Annual Report) Hyattsville, MD: Author. One-parent families increasing. (1986, November). The Washington Post p. 14. Oremland, E., & Oremland, J. (1973). The effects of hospitalization on children Springfield, IL: Charles C. Thomas. Pardeck, J. A., & Pardeck, J. T. (1984). An overview of the bibl iotherapeutic treatment approach: Implications for clinical social work practice. Family Theraov 11> 241-252. Pasley, K., & Gecas, V. (1984). Stresses and satisfactions of the parental role. Personnel and Guidance Journal 62, 400-403. Pearl in, L., & Schooler, C. (1978). The structure of coping. Journal of Health and Social Behavior 19, 2-21. Penn, P. (1983). Coalitions and binding interactions in families with chronic illness. Family Systems Medicine 1, 16-25. Peterson, L., & Shigetomi, C. (1982). One year follow-up of elective surgery child patients receiving preoperative preparation. Journal of Pediatric Psychology 70, 43-48. Petrillo, M., & Sanger, S. (1980). Emotional care of the hospitalized child Philadelphia: J. B. Lippincott. Pitchert, J. W., & Elam, P. (1985). Readability formulas may mislead you. Patient Education and Counseling 5, 181-191. Procidano, M., & Heller, F. (1983). Measures of perceived social support from friends and from family: Three validation studies. American Journal of Community Psychology U, 1-25. Puryear, D. (1979). Helping people in crisis (Social and Behavioral Science Series). San Francisco: Jossey-Bass. Rae, W. (1981). Hospitalized latency-age children: Implications for psychosocial care. Children's Health Care 9, 59-63. Rapoport, L. (1971). The state of crisis: Some theoretical considerations. In H. Barten (Ed.), Brief therapies (pp. 127-134). New York: Behavioral Publications. Robinson, D. (1968). Mothers' fear, their children's well-being in hospital, and the study of illness behavior. British Journal of Preventive Social Medicine 22, 228-233.

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132 Roessler, R., & Bolton, B. (1978). Psychosocial adjustment to disabil ity Baltimore, MD: University Park Press. Rogers, T. R., Forehand, R., Furey, W., Baskin, C, Finch, A. J., & Jordan, S. (1984). Heart surgery in infants: A preliminary assessment of maternal adaption. Children's Health Care 13, 52-58. Roskies, E., Mongeon, M., & Gagnon-Lefebvre, B. (1978). Increasing maternal participation in the hospitalization of young children. Medical Care 16, 765-777. Satir, V. (1964). Con.ioint family therapy: A guide to theory and technique Palo Alto, OA: Science and Behavior Books. Schaefer, C, Coyne, J. C, & Lazarus, R. S. (1981). The healthrelated functions of social support. Journal of Behavioral Medicine 4, 381-406. Schmeltz, K., & White, G. (1982). A survey of parent groups: Prehospital admission. Maternal -Child Nursing Journal H, 75-86. Schowalter, J. E. (1986). Twenty years of pediatric thanatology. Children's Health Care 14, 157-162. Seligman, M. (1985). Handicapped children and their families. Journal of Counseling and Development 64> 274-276. Selye, H. (1956). The stress of life New York: McGraw-Hill Selye, H. (1974). Stress without distress Philadelphia: J. B. Lippincott. Shaw, E. G., & Routh, D. K. (1982). Effect of mother presence on children's reactions to aversive procedures. Journal of Pediatric Psychology 7, 33-42. Skipper, J. K., & Leonard, R. C. (1968). Children, stress, and hospitalization: A field experiment. Journal of Health and Social Behavior 9, 275-287. Skipper, J. K., Leonard, R. C, & Rhymes, J. (1968). Child hospitalization and social interaction: An experimental study of mothers' feelings of stress, adaptation, and satisfaction. Medical Care 6, 496-506. Small, N. S. (1980). You're going to have an operation. In B. Melamed & L. Siegel (Eds.), Behavioral medicine: Practical applications in health care (p. 355). New York: Springer. Small, N. S. (1985a). The evolution of a cost-effective grief counseling program for parents of dying children. Early Child Development and Care 23, 31-39.

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1 133 Small, N. S. (1985b). The Gainesville. Florida. Ronald McDonald House: What is it ? Unpublished Pilot Project, University of Florida, Department of Counselor Education, Gainesville. Sourkas, B. M. (1982). The deepening shade: Psychological aspects of life-threatening illness Pittsburgh: University of Pittsburgh Press. Starr, P. (1982). The social transformation of American medicine New York: Basic Books. Thoits, P. A. (1986). Social support as coping assistance. Journal of Consulting and Clinical Psychology 54 414-423. Thompson, R. H. (1985). Psychosocial research on pediatric hospitalization and health care Springfield, IL: Charles C. Thomas. Thompson, R. H. (1986). Where we stand: Twenty years of research on pediatric hospitalization and health care. Children's Health Care 14, 200-210. Traughber, B., & Cataldo, M. (1982). Biobehavioral effects of pediatric hospitalization. In J. Tuma (Ed.), Handbook for the practice of pediatric psychology (pp. 111-121). New York: Wiley. Trout, M. D. (1983). Birth of a sick or handicapped infant: Impact on the family. Child Welfare League of America 62, 337-349. Vaux, A. (1985). Variations in social support associated with gender, ethnicity, and age. Journal of Social Issues 41, 89-110. Velasco de Parra, M., Davila de Cortazar, S., & Covarrubias-Espinoza, G. (1983). The adaptive pattern of families with a leukemic child. Family Systems Medicine 1, 30-35. Vernon, D., Foley, J., Sipowicz, R., & Schulman, J, (1965). The psychological responses of children to hospitalization and illness Springfield, IL: Charles C. Thomas. Visser, A. (1980). Effects of an information booklet on well-being of hospital patients. Patient Counseling and Health Education 22, 5164. ~ Waechter, E. H. (1984). Dying children: Patterns of coping. In H. Wass & C. Corr (Eds.), Children and death (pp. 51-68). New York: Hemisphere. Walker, G. (1983). The pact: The caretaker-parent/ill -child coalition in families with chronic illness. Family Systems Medicine 1, 6-15.

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134 Wethington, E., & Kessler, R. C. (1986). Perceived support, received support, and adjustment to stressful life events. Journal of Health and Social Behavior 27, 78-89. Wolfer, J., & Visintainer, M. (1975). Pediatric surgical patients and parents' stress responses and adjustment. Nursing Research 24 244255. Yarrow, M. R. (1955). The psychological meaning of mental illness. Journal of Social Issues 11, 22-23. Zarski, J. J., Bubenzer, D. L., & West, J. D. (1986). Social interest, stress, and the prediction of health status. Journal of Counseling and Development 64 386-389.

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BIOGRAPHICAL SKETCH Natalie Settimelli Small was born in 1933 and raised in Quincy, Massachusetts. She attended Tufts University where she was the first woman editor of the Tufts yearbook. Following graduation in 1955, she spent a year as a Stewart scholar studying in Florence, Italy. Married in 1956 to Parker Adams Small, Jr., M.D., Natalie spent a nomadic life teaching in Cincinnati and Philadelphia and raising three children in Washington, D.C., England, Switzerland, and Gainesville, Florida. She earned an Ed.S. in counseling at the University of Florida in 1976. As a member of the Department of Pediatrics of the University of Florida College of Medicine and the Department of Social Work Services at Shands Hospital, Natalie has been counseling families with chronic illness since 1976. Her interest in cost-effective counseling resulted in her developing booklets and slide tapes for patient education on intensive care units, diabetes, hospital orientation, and preparation of children for surgery. She is involved in teaching the psychosocial aspects of serious illness and death to medical students and is a founding member of the Board of Directors of the Gainesville Ronald McDonald House. In 1980, Natalie accompanied Virginia Satir and spent 3 weeks examining health care systems and family life in China. Natalie was 135

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136 invited to Nigeria, in 1982, where she was a consultant on cost-effective counseling at the University of Lagos. Natalie's research on helping families to cope with chronic illness led to her receiving her Ph.D. in counseling in 1987.

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I certify that I have read this study and that in my opinion it conforms to acceptable standards of scholarly presentation and is fully adequate, in scope and quality, as a dissertation for the degree of Doctor of Philosophy. Associate Professor of Counselor Education I certify that I have read this study and that in my opinion it conforms to acceptable standards of scholarly presentation and is fully adequate, in scope and quality, as a dissertation for the degree of Doctor of Philosophy. Professor of Counselor Education I certify that I have read this study and that in my opinion it conforms to acceptable standards of scholarly presentation and is fully adequate, in scope and quality, as a dissertation for the degree of Doctor of Philosophy. flannelore Wass Professor of Foundations of Education This dissertation was submitted to the Graduate Faculty of the College of Education and to the Graduate School and was accepted as partial fulfillment of the requirements for the degree of Doctor of Philosophy. August 1987 Jane Asso<^iate Dean, Graduate School