Needs and concerns of fathers in families where a child is seriously ill

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Needs and concerns of fathers in families where a child is seriously ill
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Thesis--University of Florida.
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Includes bibliographical references (leaves 160-163).
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by James Thomas Wagner.
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Typescript.
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Vita.

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NEEDS AND CONCERNS OF FATHERS
IN FAMILIES
WHERE A CHILD IS SERIOUSLY ILL













By

James Thomas Wagner


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


UNIVERSITY OF FLORIDA


1979
































To My Parents

Mr. and Mrs. William Merle Wagner













ACKNOWLEDGMENTS

The interest, support, guidance, and enthusiasm of many individuals

has made possible the initiation and completion of this research. I

would like to express my thanksgiving to each of these persons.

My parents, to whom this research is dedicated, for their gifts

of love, patience, and wisdom in my growth and development.

The Father at Shands Teaching Hospital who alerted me to the need

for such a project in speaking of the experience of his child's serious

illness, "Whenever someone inquires about what is happening, they usually

ask, 'How is your wife doing?' They never ask about me."

Mary Anne and Scott, my wife and son, who have supported my work

with love while also needing me to be husband and father, which has

resulted in a more balanced lifestyle.

My committee chairperson, Dr. Larry C. Loesch, for his outstanding

support and encouragement. Largely due to his style of guidance, I

have retained a desire to do research.

Drs. Paul J. Wittmer, J. Milan Kolarik, and Paul G. Schauble, my

doctoral committee, for their integrity and their care in reviewing my

work.

Betty E. Black, who not only typed the manuscript, but also read

it with an understanding and evaluative eye, and supported me in the

process.

The following list of persons who contributed time and energy

gathering data because they valued an idea:

iii










Lucy Barksdale, R.N.
Vanderbilt University Hospital
Nashville, Tennessee


Karen Beckett, R.N.
St. Louis Children's Hospital
St. Louis, Missouri


Lorraine Bivalec, R.N.
Pacific Medical Center
San Francisco, California


Gary Brock, Chaplain
Vanderbilt University Hospital
Nashville, Tennessee


Cheryl Conatser, R.N.
Children's Medical Center
Dallas, Texas


Trish Greene, R.N.
North Carolina Memorial Hospital
Chapel Hill, North Carolina


Vernon Maxa, Chaplain
University of Virginia Medical Center
Charlottsville, Virginia


Jack McCullough, M.S.W.
Children's Hospital
Birmingham, Alabama


Brandy McDaniel, M.S.W.
Duke Hospital
Durham, North Carolina


Ann Pryor, R.N.
Medical College of Virginia
Richmond, Virginia


John Saeger, Chaplain
University of Iowa Hospitals
& Clinics
Iowa City, Iowa


James Stapleford, Chaplain
Iowa Methodist Medical Center
Des Moines, Iowa


Wayne Willis, Chaplain
Norton Children's Hospital
Louisville, Kentucky














TABLE OF CONTENTS


Page
ACKNOWLEDGMENTS iii

LIST OF TABLES vii

ABSTRACT x

CHAPTER I INTRODUCTION 1

Statement of Problem 10
Research Questions 12
Definition of Terms 13
Delimitations 14

CHAPTER II A REVIEW OF THE LITERATURE 16

Clinical Extrapolations 16
Needs of the Child-Patient 17
Needs of the Family 18
Staff-Family Relationships 22
Concepts in Care 23
Group Approaches 25
Sibling Concerns 27
Interviews with Parents 28
Observations of Parents 31
Summary of the Literature 32

CHAPTER III RESEARCH METHODOLOGY 36

Types of Interviewers 37
Selection of Interviewers 39
Selection of Subjects 41
Generalizability of Fathers 42
Instrumentation 43
Data Collection and Recording 46
Analysis of Data 48
Procedural Difficulties 50
Limitations 53

CHAPTER IV THE FINDINGS 55

Introduction 55
Description of the Fathers 55
Types of Interviewers 58









Page

Crosstabulation Analyses 60
Summary 76

CHAPTER V DISCUSSION AND CONCLUSIONS 77

Introduction 77
Summary of the Findings 77
Discussion 78
Section One: External Support Systems 78
Section Two: Father's Relationship to Family 84
Section Three: Personal Experience of the
Father 92
Implications 97
Suggestions for Further Research 101

APPENDIX A GUIDE FOR INITIAL TELEPHONE CONTACT
WITH INTERVIEWERS 103

APPENDIX B INSTRUCTIONS TO INTERVIEWERS 105

APPENDIX C INTERVIEW DATA SHEET 109

APPENDIX D STRUCTURED INTERVIEW 114

APPENDIX E RESPONSE ALTERNATIVE TABULATION FORM 117

APPENDIX F STATISTICALLY SIGNIFICANT RELATIONSHIPS:
DEMOGRAPHIC CHARACTERISTICS BY
INTERVIEW ITEM 123

REFERENCES 160

BIOGRAPHICAL SKETCH 164














LIST OF TABLES


DEMOGRAPHIC DATA OF FATHERS

DESCRIPTION OF INTERVIEWERS

GEOGRAPHICAL SETTING OF FATHERS AND INTERVIEWERS


INTERVIEW ITEMS

INTERVIEW ITEMS

INTERVIEW ITEMS

INTERVIEW ITEMS

INTERVIEW ITEMS

INTERVIEW ITEMS

INTERVIEW ITEMS

INTERVIEW ITEMS

INTERVIEW ITEMS

INTERVIEW ITEMS

INTERVIEW ITEMS

INTERVIEW ITEMS

INTERVIEW ITEMS

INTERVIEW ITEMS

INTERVIEW ITEMS


FATHER'S AGE

NUMBER OF YEARS MARRIED

FATHER'S OCCUPATION

FATHER'S EDUCATION LEVEL

FATHER'S LEVEL OF INCOME

FATHER'S RACE

FATHER'S RELIGIOUS PREFERENCE

NUMBER OF SIBLINGS

WIFE'S EMPLOYMENT STATUS

WIFE'S EDUCATION

CHILD-PATIENT AGE

SEX OF CHILD-PATIENT

CHILD-PATIENT'S GRADE IN SCHOOL

COURSE OF ILLNESS

DIAGNOSIS OF ILLNESS


19 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 8
AND FATHER'S AGE

20 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 12
AND FATHER'S AGE


TABLE

1

2

3


Page

56

58

59











Page


21 CHI SQUARE ANALYSIS FOR INTERVIEW
AND FATHER'S AGE

22 CHI SQUARE ANALYSIS FOR INTERVIEW
AND FATHER'S YEARS MARRIED

23 CHI SQUARE ANALYSIS FOR INTERVIEW
AND FATHER'S YEARS MARRIED

24 CHI SQUARE ANALYSIS FOR INTERVIEW
AND FATHER'S YEARS MARRIED

25 CHI SQUARE ANALYSIS FOR INTERVIEW
AND FATHER'S OCCUPATION

26 CHI SQUARE ANALYSIS FOR INTERVIEW
AND FATHER'S OCCUPATION

27 CHI SQUARE ANALYSIS FOR INTERVIEW
AND FATHER'S OCCUPATION

28 CHI SQUARE ANALYSIS FOR INTERVIEW
AND FATHER'S OCCUPATION

29 CHI SQUARE ANALYSIS FOR INTERVIEW
AND FATHER'S OCCUPATION

30 CHI SQUARE ANALYSIS FOR INTERVIEW
AND EDUCATION LEVEL OF FATHER

31 CHI SQUARE ANALYSIS FOR INTERVIEW
AND EDUCATION LEVEL OF FATHER

32 CHI SQUARE ANALYSIS FOR INTERVIEW
AND RACE OF FATHER


QUESTION 13


QUESTION 8


QUESTION 12


QUESTION 13


QUESTION 9


QUESTION 13


QUESTION 14


QUESTION 17


QUESTION 18


QUESTION 11


QUESTION 14


QUESTION 14


33 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 2
AND FATHER'S RELIGIOUS PREFERENCE

34 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 14
AND FATHER'S RELIGIOUS PREFERENCE

35 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 9
AND CHILD'S COURSE OF ILLNESS

36 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 10
AND CHILD'S COURSE OF ILLNESS


viii


133


138


TABLE










TABLE Page

37 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 14
AND CHILD'S COURSE OF ILLNESS 141

38 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 7
AND CHILD-PATIENT'S AGE 142

39 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 9
AND CHILD-PATIENT'S AGE 144

40 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 11
AND CHILD-PATIENT'S AGE 146

41 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 13
AND CHILD-PATIENT'S AGE 148

42 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 11
AND NUMBER OF CHILD-PATIENT'S SIBLINGS 150

43 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 12
AND NUMBER OF CHILD-PATIENT'S SIBLINGS 151

44 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 14
AND NUMBER OF CHILD-PATIENT'S SIBLINGS 152

45 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 15
AND CHILD-PATIENT'S DIAGNOSIS 153

46 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 7
AND CHILD-PATIENT'S GRADE IN SCHOOL 154

47 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 11
AND CHILD-PATIENT'S GRADE IN SCHOOL 156

48 CHI SQUARE ANALYSIS FOR INTERVIEW QUESTION 14
AND CHILD-PATIENT'S GRADE IN SCHOOL 158













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



NEEDS AND CONCERNS OF FATHERS IN FAMILIES
WHERE A CHILD IS SERIOUSLY ILL

By

James Thomas Wagner

December 1979
Chairman: Larry C. Loesch

Major Department: Counselor Education

The purpose of this study was to gain insight into the needs and

concerns of fathers who have a child who is seriously ill. No previous

studies of fathers were extant in the literature and, as a result, this

study represented seminal research.

The research methodology selected for gathering data was that of

the semi-structured interview format, a descriptive approach. Forty-

nine fathers of seriously ill children representing intact nuclear

families were interviewed. In all cases, the child-patient had been

diagnosed at least six months prior to each interview. The interviewers

were either Chaplains, Nurses, or Social Workers, all closely associated

with the health care team having responsibility for the care of the

child-patient. The interviewers represented ten states and twelve

health care institutions. The data are generalizable, therefore, to the










types of fathers most often met in hospital, with the exceptions of

ethnic minorities, single parents, and an absence of fathers from

the northwest and northeast.

The forty-nine fathers provided demographic data regarding them-

selves and their families as well as answered eighteen questions on the

semi-structured interview guide, which was focused on three areas:

The father's relationship to external support systems, relationship

to his family, and the father's personal experience. Statistical

analysis involved crosstabulations of each interview item with each

demographic characteristic. Variations of Chi square were used to

determine significance, with an established alpha level of .05. While

there were scattered results that were statistically significant, the

responses of the fathers seemed to be largely independent of the demo-

graphic characteristics.

The findings indicated that the fathers were affected by the child's

serious illness in almost all spheres of their lives. External supports

were valued, but often inadequate if not absent. The supports most

often mentioned were hospital staff and the church. Fathers felt these

were more useful to their wives, however, than to them. While the

crisis of illness resulted in more devotion to family, fathers felt the

marital relationship to be under much pressure. Communication and prob-

lem solving skills were often inadequate to preserve a desired level of

quality in the relationship. Career growth was often cited as an im-

portant issue in the family. Personal values and life philosophy were

also influenced. There was a devaluing of material possessions, and

a tendency toward taking neither time nor relationships for granted.













CHAPTER I

INTRODUCTION



The occurrence of serious illness is an unwelcome and intrusive

event in family life. Familial role responsibilities and tasks are

often upset as a result (Koos, 1946). The cost of health care is

often sufficient to seriously threaten, if not destroy, family

resources. Aspects of serious illness such as chronic processes,

amputation or loss of body-part-function may also permanently alter

family relationships. A variety of covert stresses also assault the

family, including those psychological aspects which associate illness

with personal punishment, guilt or failure. Efforts to cope with

these factors are generally described as the task of "accepting the

reality of illness." Such a task requires a maximum system-wide

effort on the part of the family.

When the experience of serious illness features a child as the

patient, the family faces additional and often unique coping tasks

(Kaplan, Grobstein, and Smith, 1976). An initial and ongoing task

is deciding how life can continue to be meaningful in a world where

children can become seriously ill and, at times, die. Because

serious illness in children is somewhat unusual (two to three

thousand new cases of leukemia annually, for example) in the United

States, treatment facilities are usually found in teaching and/or










research centers (Leventhal and Hersh, 1974). This frequently

requires families to accept referrals for health care to locations

some distances from their homes. Hospitalization and out-patient

supervision of care may necessitate many trips to these distant

facilities. Accordingly, separation from familiar support systems,

as well as further disruption to family routines, is common.

Disruption to the family's lifestyle has been lessened by

positive, recent changes in the practice of Pediatrics (Knudson and

Natterson, 1960). Two decades ago, when the child-patient was

admitted to hospital, parents were asked to support treatment plans,

visit their child on week-ends, and advised to return home in the

interim. Under this approach, health professionals believed that

children cried less, accepted treatment more readily, and responded

in a more "adult" fashion to hospitalization. Unfortunately, these

assumptions were not accurate and the resulting side-effects for

the child-patient were a sense of abandonment, fearful fantasies,

and poor adjustment once having returned home. With increased

sophistication, however, the child-patient's behavior was understood

as being due to depression and regression. Consequently, one parent,

usually the mother, is now encouraged to stay with her child throughout

hospitalization. She often sleeps in the same room with her child,

participates in the child's care, and may feel that she would be a

"bad" parent to return home for even a day in order to rest or look

after other family members.










The role of the father in this scenario is somewhat different

from that of the mother. He will usually be present at hospital

during the early phases of hospitalization (typically diagnosis). He

probably returns on week-ends for visits, at crisis moments such as

surgery or acute life-threatening episodes, or during the terminal

state of the child's illness. During these visits, the father is

generally expected by health care staff to provide emotional support

for his wife, encourage the child-patient, participate in health care

decisions, and arrange for the responsible handling of hospital and

professional fees (Koop, 1969). While the father is at home during

hospitalization, he has the responsibility of managing the household,

including looking after other children if there be any, maintaining

his career and generally overseeing concerns of the home. When a

hospitalization phase ends, the family once more converts to what may

approach, if not achieve, "normal" role tasks and responsibilities.

In the case of many serious child illnesses, however, it is only a

matter of time before this sequence repeats itself.

Although parental roles in the family where a child is seriously

ill are functionally different, they are nevertheless significantly

inter-related and equal in importance. The stress of serious illness

permeates the family structure and makes its presence felt even to

the extended families. Grandparents, for example, feel upset both

for their children and their children's children. With such upset

and pressure on the entire family, it is imperative that both parents

experience as much support and comfort in their relationship as is










possible. A sense of security and clarity between mother and

father facilitates the child-patient's coping with anxiety and fear

(Leventhal and Hersh, 1974).

Achieving such an adequate level of family relatedness under

the stress of serious illness is, however, not easily accomplished.

Poor patterns of relatedness among family members existing prior to

the onset of illness (such as lack of clarity in communications,

distrust, or the inability to problem solve) are rarely enhanced

with the advent of a child's illness. If the illness experience is

acute and short in duration, this might be the result. Serious

illness, to the contrary, is almost always chronic in nature and

extends over months and perhaps years. Accordingly, family problems

in such cases are severe. For example, families with children born

with Spina Bifida have a divorce rate nine times higher than that

of the normal population. In those cases where death follows soon

after the birth, the divorce rate more closely approximates that of

the normal population, though its incidence is still elevated (Tew,

et al. 1977). Even in families with strong relationships, the

experience is extremely difficult.

Health care and helping professionals who care for seriously ill

children and their families have become increasingly aware of the

system-wide stress such an event causes. A portion of this awareness

includes the knowledge that few families learn developmentally how

to cope with this degree of stress. Western culture is described as

characteristically taking the posture of denying events of a life





5



threatening nature and consequently being unfamiliar with such

problems and how to relate to them (Aries, 1974). Central to this

cultural phenomenon is the habit of providing care for seriously

ill persons in institutions such as hospitals. In the early portion

of the twentieth century, such persons, including children, were

treated in their homes. Hospitals were for the poor and/or those

who had no family to deliver care (Knowles, 1971). When the home

existed as the center for health care, adaptive tasks in caring for

the seriously ill were perhaps no less demanding but certainly more

familiar.

Hospitals and their professional staffs are a reflection of our

culture. While technical skills are learned in training, most

affective issues and concerns are gleaned through experience. With

little or no preparation to make them feel familiar with the affective

issues related to serious illness, health and helping professionals

have struggled to respond adequately to the emotional needs and

concerns of patients and families. Awareness now exists in many

areas as to the fact that serious illness presents unique problems

to families. Many specific issues related to these concerns are not,

however, well understood. This information gap is especially true

when the patient is a child in the family.

Research in the area of serious child illness and related family

functioning has largely focused in two directions. These focal points

have related primarily to the needs of the child-patient and those

of the mother. Each has a very practical reason for its focus in the










literature: both mother and child-patient are the most available

subjects for research. Siblings are often too young to visit the

hospital as many institutions do not allow visitors under the age

of 12-14. Grandparents may live too far away or they may see much

of their usefulness in assisting to keep the family home functioning.

Fathers are most available for introspective interventions when they

visit on the week-ends. Such times usually do not fall within the

work sphere of the researcher. In general, where the needs and

concerns of the family with a child seriously ill are discussed,

those issues cited as being unique to persons other than mother and

child-patient have been generalized from the mother's expressed

concerns. She is the available person, often having large blocks

of time when she is unable even to care for her child. Being

separated from home, family and friends, the mere fact of conversation

with a researcher may of itself be therapeutic for her. Under these

circumstances, the accuracy of her generalizations to other family

members and her perceptions of their needs are questionable. Accord-

ingly, there is a need for substantive research about other family

members.

In addition to the research needs centered in members of the

family other than the mother and child-patient, there exists the

need for greater understanding of the coping issues for health and

helping professionals who work with seriously ill children. Although

the Western culture has not familiarized them with loss issues

any more than it has the child-patient's family, they have the










professional responsibility to provide care. In so doing, a

wealth of feelings are generated. Questions such as "Why do

children become seriously ill?" are a crucial part of the coping

situation but are not dealt with in professional training. Giving

care to any patient, including a child, often necessitates causing

pain. Yet causing a child pain is not usually felt as providing

care by the professional. When all cure efforts are thoughtfully

applied and the progress 'of illness is not arrested or reversed,

and death occurs, the professional may experience a sense of having

failed. While these are understood as being common emotions among

health professionals, little useful research exists which has

enunciated ways of strengthening coping responses.

From among the several alternatives the most needful area for

new investigation is an attempt to understand the needs and concerns

of the father in the family where a child is seriously ill. For the

reasons cited above, little or no information regarding the father,

other than generalizations from the mother or extrapolations from

clinical experience, is extant. Clarity regarding the father's

particular needs and concerns would be of immeasurable importance.

Added to the data available regarding the mother, this knowledge

would help health and helping professionals by allowing them to

strengthen the parental dyad, thus encouraging the foundation of the

entire family system. Such knowledge also would hopefully render

obsolete the current approach of enlisting the father in the










support of his wife and child-patient while ignoring or failing to

seek understanding into his concerns, or assuming that those needs

were already clarified. From a preventive perspective, more effective

health care delivery might result when the unique and/or common con-

cerns of husband and wife are understood and responded to adequately.

Such efforts would serve to facilitate the coping responses of the

adult family members and hopefully allow them to take better care

of each other and their children, including the child-patient.

Several alternative approaches to exploring this area of

knowledge have been available. The most thoughtful, thorough, and

sensitive of approaches was required, however, as the level of aware-

ness which was likely to be heightened for the father would necessitate

a supportive network responsive to his needs. There was, therefore,

a unique ethical dimension to the nature of any such study. To have

ignored needs identified and expressed by the fathers from whom the

data were gathered would have been irresponsible. An approach was

needed which would provide an ongoing support system. The most

economical and efficient research methodology, the questionnaire, did

not provide this support since the researcher had no access to the

affective clues in a response. Moreover, if questionnaires were

anonymously returned, no reasonable follow-up to particular concerns

was possible.

Yet another research format which was considered was that of

observation or some attempt at group therapy or group exercises.










Unfortunately, fathers were generally present at the hospital only

during times of crisis or for week-end visits when intimacy with

the wife and child-patient was a priority for them. Further, and

equally as important, was the fact that the presence of fathers was

irregular and impossible to schedule. Group approaches, exercises, or

observations therefore were awkward at best. Other alternative

approaches, such as testing, also did not lend themselves to such a

situation due to the lack of existing instruments which apply

adequately to the concerns needing evaluation. In summary, the

very intent of the research being attempted, seminal in nature,

precluded the use of many standard and more commonly employed

research methodologies.

When the nature of the research being undertaken was combined

with the ethical concerns described above, a logical approach to

data-gathering came to focus in the structured interview. Such

an approach was especially appropriate if the data-gathering person

was a member of the health or helping team having responsibility

for delivering care to the child-patient and family. This format

attended to the ethical concerns of providing a support system of

an on-going nature. Relatedly, a structured interview, with

questions commonly asked by all interviewers and the opportunity

to clarify responses to those questions provided, added the needed

dynamic quality of data-gathering in an area where so little

information exists. The central question of this research study,










therefore, was to seek understanding into the unique needs and

concerns of fathers in the family where a child is seriously ill.



Statement of Problem

The concerns addressed in this study were those of the father

in the family where a child is seriously ill. The specific concerns

focused upon were those emerging from the stresses of caring for a

seriously ill child, a process which is usually chronic in nature and

which places maximum strain on even the strongest family's adaptational

resources (Share, 1972). Such stress may cause conflicts which

pre-existed the child's illness and which were felt to have been

resolved to surface once more. It may irritate or heighten existing

tensions as well as present long term concerns for the future of the

family's relatedness. The father's unique perceptions of these

issues provided information currently not available to persons seeking

to assist the father.

Of equal concern as a problem to be investigated was the father's

personal experience of the illness. This area had two primary

directions. The first had to do with the father's internal feelings

and perceptions and the way in which he organized the experience of

his child's illness. Prior to this crisis, he felt certain hopes

for this child and undoubtedly had a sense of being personally linked

with these hopes. According to those hopes, some values were

structured to aid in meeting the hopes and aspirations of the father

through the child. Such hopes and values, now altered, may have










impact upon the father's self-image. Insight into such feelings and

their impact upon the father's philosophy of life was important for

persons working with him.

The second direction of this personal experience of the child's

illness had to do with the father's relationship to his family and

the changes, if any, which have been effected. Role responsibilities

were clearly a way of measuring these alterations. The activities

and routines of the family once counted on as providing some stability

may have changed considerably. What are the resulting attitudinal

shifts in the father toward his wife, other children, more children

in the future, the child-patient, and the extended family such as

grandparents? It was difficult to imagine that patterns of relatedness

or feelings regarding these patterns would be unchanged. Accordingly,

such information would be useful to persons counseling the fathers

of seriously ill children.

Related to, yet separate from, the personal experience of the

child's illness was the father's perception and response to the needs

for communication with significant others regarding the crisis of

illness and the issues generated by it. What sense of relatedness

did the father feel with the health care professionals when it was

his wife who was most closely in touch with this group? What patterns

of communications existed between husband and wife and what seemed to

be the father's predominant style and role in these communications?

Were there unique responsibilities given him? Traditional expectations

would view him as the strong, supportive member of the family. It was










unclear, however, how his communication in the family expressed his

needs or how those communications interact within the family itself.

The answers to these questions again would assist persons working

with such fathers.

Although there are periods of time in the chronic nature of

serious illness when family life approaches normalcy, always present

is the threat of relapse or recurrence of symptoms. Such occurrences

are implied in the descriptive word "chronic." Prior to the onset

of illness the family, to some degree, was related to the community

where they live through employment, friends, extended family, community

groups such as a club or church, mutual interests in hobbies, or even

through neighborhood acquaintances. These individuals formed a network

which could be described as a support system for the family, including

the father. When hospitalization occurs it is usually the father who

remains most closely in touch with this network in the home community.

The father's experience of this network of relationships provided useful

information because understanding where he uniquely finds support and

what changes he experiences in these relationships gave further insight

into his sense of the entire crisis.



Research Questions

This investigation sought to answer the following questions

regarding the needs and concerns of the father in a family where a

child is seriously ill.










1. What is the father's general experience of his child's

serious illness?

2. What are the father's emotional needs and concerns?

3. What unique concerns does the father have regarding his

relationship to his family?

4. What communication patterns does the father predominantly

use in coping with the stresses of his child's chronic

illness?

5. How does the father respond to and make use of community

resource and support systems?



Definitions of Terms

Father refers to the seriously-ill child's natural father, or

fatherhood achieved through legal adoption. In this study, only

those families where the nuclear family is intact were included.

Child refers to the off-spring or legally adopted person of a

husband and wife who are currently married. The age of the child

may vary from that of infancy through adolescence. It was intended,

however, that the child be living with the parents and be an integral

part of the family structure.

Serious illness refers to a chronic disease process which will,

by its nature, be life-threatening to the child. Such diseases would

include leukemia, cancer, cystic-fibrosis and other similarly regarded

illnesses. Acute processes such as some forms of leukemia, Reye's










Syndrome or congenital defects such as life-threatening heart anomolies

correctable by surgery were not included.

Duration of illness has to do with which families were selected

for inclusion in the investigation. It was felt that serious illness

in the child should have been present for a period of at least six

months before involving the father in the investigation. By this time

period, the family should have begun some effort to mobilize resources

and adapt to perceived needs. Sufficient time for reflection will

have been available also. Related to this concern was the decision to

exclude those fathers whose child was currently in crisis, such as near

death or admitted to hospital for surgery.



Delimitations

This investigation sought to focus exclusively upon the needs

and concerns of the father in the family where a child is seriously

ill. Some reflections on the part of the father focused on other members

of the family. However, these data were not for the purpose of describing

the concerns of any other family member lest a similar error originally

perpetrated upon the father be repeated. No particular effort is made

to gain insight into any other member of the family nor is a comparison

or contrast of the discovered needs of the father attempted. The purpose

of this study is to provide health and helping professionals understanding

of the unique needs, concerns and experience of the father as the father

understood them and was able to describe them to an interviewer.










There were limits associated with the use of the interview as a

research methodology (Isaac and Michael, 1975, pp. 96-97). Even under

ideal circumstances, the validity of the information obtained is

subject to question. These threats to validity focus upon the

researcher and the interviewee. Sources of error associated with the

researcher are directly related to those features which make the

structured interview an attractive research methodology in seminal

investigations. The ability to clarify the interviewee's responses

created the possibility for both subjectivity and personal bias for

the researcher. Seeking answers which seem to fit preconceived notions

was an ever present risk. It may be offset somewhat by the level of

training required for the researcher, but it was never eliminated as

a threat to validity.

Invalidity associated with the interviewee is largely personal

and linked with human limitations. The juxtaposition of researcher-

interviewee must be described in relational terms. As such, psycho-

analytic categories like transference became active portions of the

data seeking process. Antagonism toward the researcher or the

inclination to please the interviewer were possible sources for

contamination. There was, as well, a retrospective nature to the

data gathered in the interview. Memory errors on the part of the

interviewee or intervening events resulting in an altered perspective

were possible. Certainly the passage of time alone can bias such

data. It is clear, therefore, that invalidity is a reasonable threat

from both researcher and interviewee, despite the advantages of the

structured interview as a research methodology in this investigation.













CHAPTER II

A REVIEW OF THE LITERATURE


The review of the literature for this investigation has been

divided into the following topics: 1) Clinical Extrapolations, 2)

Group Approaches, 3) Sibling Concerns, 4) Interviews with Parents,

and 5) Observations of Parents. The search of the literature was

assisted by both the Psychological Abstracts Data Base available

through the Lockheed Information System, and the National Library

of Medicine's On-Line Search Service, otherwise known as Medlars II

or Medline. Medline Service reviewed the literature from January 1,

1966,to the present and Lockheed's search began January, 1967.



Clinical Extrapolations

The largest body of literature discussing the family and the

seriously ill child results from inferences based on practical

experience. The authors of such publications represent the health

or helping fields, Physicians most often reporting, then Nurses,

Social Workers, and Psychologists. From this perspective of clinical

experience, writers discuss the needs of the child-patient, those of

the family, staff-family relationships, and concepts in care for both

the child-patient and family. The use of the term "serious" illness

refers to the child-patient with either cancer or leukemia.










Needs of the Child-Patient

Richmond and Waisman (1955) began their discussion of the child's

serious illness by pointing out that the diagnosis of malignancy

carried the impact of a "death sentence," implying separation from

loved ones. They underlined, therefore, the importance of making no

significant communications to patient or family prior to an accurate

diagnosis. When communication was appropriate, it was noted that the

age of the child-patient is a guide for the physicians' approach. They

noted that many of their patients passively accepted rather uncomfort-

able treatment modalities and suggested that this passivity was actually

repression of "death anxiety." The need for professional guidance,

both for the physician and the child-patient was strongly suggested,

in order to assure accurate care for the entire health care delivery

approach.

Maxwell (1972) pointed out the hazards regarding lack of clarity

in communication with the child-patient in the case of a sixteen-year-

old where parents insisted upon withholding information. Categories

of trust were severely undermined as a result. Such a decision to

withhold information, if it stems from the anxiety of a "death

sentence," is no longer an accurate understanding of many forms of

leukemia (Leventhal and Hersh, 1974). Ninety percent of patients

achieve at least a remission and 50% will live for five years, some

having been cured. Long and difficult treatment, with numerous and

upsetting side effects such as nausea, hair loss, rashes, nightmares,

ulcers, and periods of hospitalization require open communication in










response to the child-patient's questions. School careers are inter-

rupted and questions of the future ability of the child-patient in

treatment is required. Trust crucial to cooperation was also related

to open communication.

Noting the chronic nature of most serious illnesses, Kagen-

Goodheart (1977) discussed the problems of "re-entry" for the child-

patient. Re-entry refers to those times of relative normalcy when

routine functions and activities were once more possible and permissible.

A variety of problems may result, such as lower grades at school and

resentment from siblings over what they perceive as special or "favored"

treatment for the child-patient. Regressive social behavior in the

child-patient may be noticed due to concern for body image, reluctance

to be significantly related to peers including dating the opposite sex,

and restrictions on some activities such as active sports. Develop-

mental lag may also result. It was noted that responses to the child-

patient such as over-protection were not useful. Even when amputations

occurred, adjustments and adaptations needed to be realistic. Otherwise,

the child-patient tended to be so overcome with guilt for causing un-

wanted changes in the family that efforts to realistically cope were

undermined.

Needs of the Family

Lukens and Miles (1970) indicated why health and helping professionals

should be aware of issues involved in the care of the seriously ill child:

Next to accidents, malignant disease is the most common cause
of death in children between one and fifteen years of age in
the United States. As infections, nutritional and metabolic










disorders are brought under control, it is likely that leu-
kemia and other malignant conditions will assume even greater
significance as cause for morbidity and mortality in the
pediatric age group. (p. 236)

The writings from the clinical experience mode which centered

upon the family predominantly organize material around four phases

of serious illness: Diagnosis, remission, terminal phases and the

aftermath following the death (Burgert, 1972; Friedman, 1967; Koch,

Hermann and Donaldson, 1974; Lukens and Miles, 1970). Several authors

(Futterman and Hoffman, 1970; Koop, 1969) carefully detailed family

needs which can be met in the initial diagnostic conference, particu-

larly the need for honest communication and sensitivity in responding

to questions. Pearse (1977) discussed psychological criteria of coping,

such as shock, denial, anger, bargaining, depression and acceptance.

Gyulay (1975) reminded health professionals not to overlook "forgotten"

family members, especially grandparents, siblings, and fathers. Martin-

son (1976) pointed out that families may realize a more satisfactory

adjustment when they are encouraged to care for the patient at home as

much as they are able. Schnell (1974) summarized the concerns listed

above in his discussion of the child with certain fatal genetic diseases,

such a Hurler's Syndrome.

Beginning phases of interaction occur with the diagnostic confer-

ence. For example, the approach of the health team at the University

of California Medical Center in San Francisco is a model which incor-

porates the features generally used by health professionals (Ablin

et al., 1971). Their report summarized work with thirty-one families










who indicated the initial diagnostic conference to be most important to

the establishment of rapport which continued throughout the progression

of their child's disease. The conference is scheduled several days

after the shock of learning the diagnosis and includes parents, older

siblings and grandparents. Treatment protocols are explained and dis-

cussed. Most important, however, is the initiation of both recognizing

and anticipating feelings and concerns of the family. Such issues include

coping mechanisms, grief work, what death might be like for the child-

patient, and the importance of honest communication among family members.

Koop (1969) emphasized the preservation of hope during this stage while

he also encouraged the use of community support systems by the family.

Burgert (1972) used the analogy of leukemia being like a "hurricane,"

initially striking the family with overwhelming guilt. He emphasized

that the etiology of the disease is not genetic or related to any known

cause. The need for the child-patient to live as normal as possible

is stressed for the family. They are encouraged to give no special

privileges, allow community activities, and to consistently balance

attention among all the children (Lukens and Miles, 1970).

The next suggested phase of adjustment for the family is the

onset of the first remission and the simultaneous return of normal

family routines and activities. The change is so dramatic that the

hope for an incorrect diagnosis returns and denial of reality is not

uncommon (Friedman, 1967). The needs of the family are described as

assistance in adjustment to having the child-patient at home. Parents

need assurance that home care is appropriate and safe (Burgert, 1972).










Martinson (1976) emphasized the family's continuing need to accept the

reality of the illness while allowing the child-patient to be "normal"

and siblings to feel equally important in the family. During out-patient

clinic visits conversations with other parents often reinforce the

realities of serious illness as it is learned that someone else's child

is sometimes conceived and born during this remission period.

The harshness of reality in the form of relapse brings denial and

unrealistic hopes to an end for the family. Anticipatory grief

(Lindemann, 1944) signals the effort to cope with the approaching

separation caused by death. Guilt, anger, depression, and preoccupa-

tion with the ill child are highlights of the parent's feelings. Lukens

and Miles (1970) emphasized that the family must not be abandoned during

this period as they need continuing support. Martinson (1976) suggested

that the role of home care increases in importance in that it allays

somewhat the family feeling that they have abandoned their member to the

hospital. Rees and Lutkins (1967) also suggested that home care is

important to later adjustment of the survivors following the death of

the family member. Should home care not be either an alternative or

wise to consider, parental participation in hospital care is advised,

especially that of the mother (Friedman, 1967).

Pearse (1977) traced the adjustment tasks of the family in psycho-

logical phases of grief, using the schema of Elizabeth Kubler-Ross

(1969) as a model. She emphasized the dimensions of denial, guilt, and

anger. Gyulay (1975) reminded health professionals not to overlook

the'"forgotten" grievers, such as father, siblings, and grandparents.










She then goes on to suggest a series of concerns related to the father,

such as always being non-communicative with his wife, wishing more

than anyone else in the family to treat the ill-child normally, and

feeling "shut-out" of any care for the child.

Each of the authors who have written regarding the needs of the

family emphasize the importance of follow-up intervention after the

death of the child-patient. Burgert contrasted two feelings in the

family: relief and depression. Friedman noted that many questions of

the family which were posed during the diagnostic meeting were asked

again months after the death, particularly those questions associated

with etiology. Continued adjustment on the part of the family was bene-

fited by contact with those persons who shared with them in the day-to-

day struggle with the illness. Pearse made the useful point that the

key to satisfactory adjustment for the family was early intervention

by the health or helping team.

Staff-Family Relationships

Williams (1963) described the initial problem to be overcome in

staff-family relationship. His remarks focus the shift which occurs

when the family is referred from intimacy and familiarity of the family

physician to that of the large institutional hospital, usually a center.

Staff turnover is such that frequent adjustment to new physicians is

an ongoing task. From the perspective of staff, the most difficult

issue is suggested as being aware that patients and families are persons

who have individual problems and concerns. Such problems would have

been noted by the family physician.










Kirkpatrick, Hoffman, and Futterman (1974) dealt more compre-

hensively with these issues in their discussion of the trusting rela-

tionship between family and staff, particularly the physician. They

assert that the dilemma of trust is associated with the ambiguous

nature of serious illness. That is, most serious illnesses are un-

explainable as to etiology and are unpredictable in the course they

will take. Families, therefore, cannot be told "how" or "why" illness

has occurred, nor can they be given information which would allow them

to prepare for what lies ahead. Such ambiguity runs contrary to the

cultural expectations generally held of the physician: That he knows

precisely issues of causation and prognostication.

Throughout the illness experience, the ambiguity feature serves

to undermine trust. At particular points the dilemma of trust and

mistrust is heightened. Such times include diagnosis, remission, relapse,

complications more severe than expected or those completely unexpected,

turnover in medical staff, periods of hospitalization and during the

terminal phases. At such times as the latter, the limitations of the

physicians become more apparent and levels of discomfort with death

may mean that the family feels personally abandoned by the physician.

Concepts in Care

In a most eloquent fashion, Benoliel (1972) postulated that the

experience of illness for the child-patient, as well as family and

health team, is dependent upon the interaction between family and health

professionals. She suggested that this interaction occurs under the

umbrella of the "death threat" imposed by serious illness. The possible










responses to this threat often had negative results for the child-patient.

Families, for example, may respond in several pathological ways, including

the "favorite" child syndrome which means special treatment, "protecting"

the child which means withholding honest communication, and "social

isolation" which consists of not listening to the child-patient's con-

cerns. On the other hand, health professionals are vulnerable to giving

greater value to life-saving activities than to palliation and comfort,

interpreting death as a failure and a loss or reduction in professional

competence and worth, and feeling vulnerable to a loss of control,

composure or being overcome by the stress of their relationship to the

child-patient. The result for the physician is avoidance if not aban-

donment of the patient and family.

Benoliel calls for a reassessment of the "cure" and "care" mentality

saying that the family and health team, without such consideration, will

be unable to adequately respond to the child-patient. Specifically, the

child-patient needs to know what is happening and to be able to speak

with someone of this reality, to have the opportunity to participate in

as many treatment decisions as possible, and the opportunity to experi-

ence real feelings including not protecting anyone from feeling bad.

The pathological responses of family and health team thwart these needs

of the child-patient. In addition, the resulting organizational approach

of the "cure" mentality fails to meet the personal care needs of both

family and health team.










Group Approaches
The School of Medicine at the University of New Mexico provided

the report of group applications to the concerns of parents with

leukemic children (Heffron, Bommelaere and Masters, 1973). From a

caseload of twenty-four child-patients, eighteen "parents" attended

a loosely structured group during the first year. Attendance by

"parents" was regular during periods of relapse and irregular during

remission. Although the article and much of its content referred to

the child-patient's "parents," attendance was almost exclusively by

mothers. In fact, discussion among mothers at times centered upon

the absence of the husband-father.

Problems arose with husband-wife relationships. Husbands
could disappear at work and frequently "had" to work long
overtime hours. Wives were left to handle the trips to the
clinic and the constant exposure to a sick and often unrea-
sonable child. Wives felt that they were subjected to more
than their share of the emotional involvement of chronic
illness and frequently resented this role (p. 836).

The intent of the informal group sessions was twofold: To

identify problems and solutions associated with the patient, family,

siblings, and friends and medical staff, and to serve as a forum for

the dissemination of information. The benefits appeared to be those

of the mothers sharing common experiences and the establishment of

better communication patterns among family and staff. Much discussion

centered around the sense of guilt that the mothers felt led to over-

protection and favored treatment of the child-patient. Staff felt they

noticed a grief pattern among the mothers similar to the stages identi-

fied by Kubler-Ross (1969).










Wright (1974) outlined a consultation group approach with parents

which had as its emphasis teaching childrearing which was adapted

specifically to the concerns of the seriously ill child. As a member

of the oncology health care team at the Oklahoma Health Sciences

Center, the author observed that parents are often ill-equipped

either to understand or respond to a child who is seriously ill.

Therefore, the approach in group sessions was largely didactic, making

large use of behavior principles. As understanding increased, Wright

then employed modeling techniques to demonstrate empathic qualities.

During the sixteen week long process, much improvement in parental

skills was reported. Primary benefits reported were an increase in

communication among the wives and increased availability of information.

The social worker/leader of the group reported that individual mothers

sought her consultation more frequently following the group sessions.

Moreover, the social worker felt the mothers experienced reduction of

anxiety, improved ego strength, and a more thoughtful integration of

reality (p. 806).

Columbus Children's Hospital in Ohio provided the third report

of group process (Kartha and Ertel, 1976). Six mothers, five of whom

attended regularly, were included in a highly structured group which

was held for seven meetings. Limited intimacy was achieved due to the

structured nature of the sessions and was reinforced by a group deci-

sion not to become too personal.










Sibling Concerns

Feinberg (1970) presented a fascinating case study of two sisters

whose brother, Charles, died of leukemia during the latter portion of

weekly and individual therapy sessions which lasted for ten months.

The discussion is of a technical nature with a psychoanalytic orienta-

tion. Perhaps the most useful findings suggest strong support for

preventive interactions with healthy siblings during the crisis event

of illness. It was noted by Feinberg that childhood bereavement is

not well-understood, although it apparently differs significantly from

adults in the degree to which it is sustained over an extended period

of time. Questions of "normal" as compared to "abnormal" childhood

mourning and the comparison/contrast between loss of a parent or loss

of a sibling are not explored.

In 1969, Binger et al., pointed out a persistent pattern of

behavior disorders, including enuresis, headaches, depression, and

school difficulties, in the siblings of leukemic patients. Investi-

gating these findings in a new manner, Gogan and associates (1977)

used a questionnaire to survey thirteen siblings ranging in age from

eight to twenty-eight, each of whom had a brother or sister diagnosed

with cancer at least five years prior to the study. The primary

finding was the affirmation of honesty in family communication among

all members. Other classical concerns were expressed, but not neces-

sarily by a majority of those questioned. There was evidence, however,

of several siblings having felt abandoned in addition to feeling guilt

over anger at the patient. Subsequent sibling rivalry also was heightened.










The authors call for more sophisticated and broadly based research in-

cluding input from community resources having contact with siblings

such as school teachers or counselors.

Townes and Wold (1969) reported a longitudinal study of twenty-

two healthy siblings from eight different families who were interviewed

on three separate occasions between 1965-1967. On successive interviews,

immediate differences in family communication patterns were notcied.

Initially, open communication was provided to siblings nine years of

age and older. Siblings under age five were provided little or no

special attention in understanding diagnosis. By the third interview,

in 1967, no discernible differences existed in communication with sib-

lings regardless of age. Correlated with clear communication was a

corresponding clarity in the expected outcome of the malignant process.

This helped prepare all siblings for the usually fatal outcome of leu-

kemia. It is interesting to note that male siblings seemed to have

more difficulty being realistic regarding the diagnosis than did female

siblings. This was especially true with first-born males in the family

and adjustment difficulties preceded as well as followed the death of

the brother or sister. Social and school problems were often associated

and were heightened when the mother in the family was both anxious and

non-communicative regarding accurate information to the siblings.



Interviews with Parents

Bozeman et al. (1955) did three to five interviews with twenty

mothers of leukemic children during the course of the child's illness.










The interview schedule evolved as the study progressed and no mother

answered all of the questions asked. Fathers were not included in

the interviews. Responses of the mothers indicated the time of

diagnosis to be extremely difficult and associated with a "death

sentence." The manner in which the diagnosis was communicated was

important, particularly when some hope was encouraged. Coping be-

havior took the form of caring for the child and learning more about

the disease. The mothers found it particularly difficult to handle

separation from the child, yet needed temporary opportunities for

rest as well as support for themselves. Mothers did discuss their

husband's often severe reaction to diagnosis, particularly when the

ill child was female.

Freedman (1969) urged a follow-up conference with parents of a

deceased child. He encouraged that this interview be conducted by

the physician who delivered primary care to the child-patient during

treatment. He suggested that it would be helpful to the family and

instructive to the health care staff. Several acticles follow the

suggestion of Freedman, the most informative perhaps being that of

Ringer et al. (1969). This retrospective study interviewed twenty

families using a loosely structured format usually requiring two-three

hours to complete. Key results supported earlier findings of the need

for accurate information during diagnosis which facilitates the anti-

cipatory grief reaction. Loneliness was paramount for every family

member, including the child-patient, when open communication did not

exist. Support systems which were pre-existent to the crisis of illness










usually continued to be meaningful throughout. A brief mention of

fathers notes that they were frequently absent from hospital, even at

crisis moments, which were interpreted as a need for special support

(p. 416). It was also discovered that eleven of the twenty families

had emotional problems following the death which were severe enough

to require professional attention.

Other reports of similar follow-up interviews were published which

generally support the findings of Binger. Oakley and Patterson (1971)

added the "replacement child" tendency in the fifteen families which he

reports having interviewed. Lascari and Stehbens (1975) found the dis-

cussion of etiology to be extremely important to parents because of its

subsequent relief of guilt associated with causation. Tietz et al. (1977)

interviewed poor and disadvantaged families and reiterated the high pre-

ponderance of emotional problems due to unresolved grief.

As a nurse-researcher, Frieberg (1972) interviewed twenty-five

mothers throughout the course of multiple hospitalizations. She noted

fear and anxiety in the mothers which was apparently associated, in

part, with lack of information and understanding, guilt, and disruption

to the entire family. Farkas (1974) attempted a study of thirty-six

families which she acknowledged were selected by the medical director

of an Oncology Unit because of their excellent adjustment to the illness

crisis. Consequently, Farkas devotes the major portion of her article

to the difficulties faced by a psychologist in doing research in a medical

setting. The establishment of trust is cited as the crucial issue.

Schulman (1976) has published one of the few books available which seeks










to focus issues of importance during the child's illness. The effort

is disappointing in that the interviews cited are largely anecdotal

and those with health professionals frequently inaccurate. An example

is a portion contributed by a hematologist who discusses the coping

responses of the father:

When you say, "What enables them to cope," it depends how
you define it. Some fathers cope well by not being involved
at all. They're not upset; they're not worried; they don't
come to the clinic; they stay out of it. There are a
lot of fathers I never see except at the initial diagnosis.
(pp. 317-18)



Observations of Parents

Friedman et al. (1963), through their work at the National

Cancer Institute in Bethesda, Maryland, observed forty-six parents

of children with cancer. Hospital Staff also contributed observational

data to the study. The length of observations varied from one week to

eight months, with the average length of time being one to two months.

Twenty-six mothers and twenty fathers comprised the study group. The

shock of diagnosis was very traumatic for all parents, although the

researchers did not note the presence of denial as a coping response.

Guilt feelings were eased significantly by the accurate communication

of information to the parents. The number of questions asked by parents

was often interpreted as a measure of their anxiety.

A consistent issue of conflict surrounded the decision of what to

tell the child-patient. Most parents were reluctant to tell the truth,

although the process of treatment as well as the affect of parents made

the child-patient aware that something important though unspoken was










happening. This often resulted in alienation and loneliness within a

family. Grandparents were observed to cope less well than the parents,

which placed unexpected demands upon the parents to provide support

to their families of origin. Remission and the return home which was

hoped for was often filled with anxiety when parents realized they would

be totally responsible for the child's care. Grief at the time of death

seemed appropriate, providing both a sense of relief and an end to

suffering. Mann (1974), in her observation of twelve mothers of leu-

kemic children, largely repeated the findings outlined above. In addi-

tion, she noted the maternal tendency to over-protect and cater to the

child-patient, often to the neglect of other family members.

Townes, Wold and Holmes (1974) report a longitudinal study in

which eight families were observed over a three year period. Each

family had a child with leukemia. They noted, at the outset, that

"little information is available about the reactions of fathers of

dying children" (p. 9). Summarizing their findings, the authors sug-

gest that the fathers in their study seemed more realistic regarding

the illness of their child and better adjusted in the process of

grieving than were the mothers. The mourning of mothers seemed more

prolonged and marked by the expression of negative feelings toward

hospital staff.



Summary of the Literature

An additional bibliographic source has not as yet been cited.

It is the work of Harriet Schiff (1977) in which she personally










shares the experience of the illness and resulting death of her ten

year old son. It is a book written from the perspective of a fellow-

traveler directed to other parents now traveling the journey marked

by a seriously ill child. In her sharing, she candidly reports her

view and experience of marital difficulties related to the stress of

illness. She encourages couples to seek professional guidance and

support during and following the illness and death.

In summary the literature posits a picture of serious illness

in children as increasingly being of a chronic nature, with treatment

extending over a period of several years, and requiring from the family

a maximum coping effort in response to stress of an unusual nature.

That casualties result in many families, in the form of emotional

difficulties if not physical complaints, is well documented. The

experience of serious illness is disruptive to the entire family unit

and requires ongoing and frequent adaptation from every member.

The extant literature is remarkably consistent in several im-

portant ways. It is usually the result of clinical experience, either

from physicians reporting their experiences working with child-patients

and their families, with suggestions for organizational approaches in

the treatment plan, or it is efforts to understand the particular con-

cerns or issues related to the child-patient, the mother, or siblings

of the child-patient. Where studies have attempted to select a speci-

fic population as the data base, the number of individuals or families

included have been markedly small. In addition, interview schedules,

questionnaires, observations, and other measurement plans have been










devised in the process of the study or unevenly applied to the popula-

tion. Validity, therefore, does not approach defensibility.

The consistency in approach to the study of a child's serious

illness is matched by a relative evenness in the reported findings.

The event of diagnosis and the manner in which this time is structured

for families by the medical staff is of monumental importance. In

these initial conferences is established a tone of honest communication

and clarification of issues which facilitates the anticipatory grief

reaction so important to long-term adjustment and resolution. Psycho-

logical dimensions such as guilt, denial, anger and depression can be

acknowledged and pinpointed as important concerns to be aware of and

to discuss. The child-patient's need to be included in the communica-

tion process seems clear. This need balanced with that of hope and care

can avoid the experience of alienation and loneliness for the entire

family. Traditional sources of support for the family, such as from

grandparents, cannot be counted upon, and a looking to hospital staff

for emotional support may be more appropriate than is generally under-

stood. The need for such support is ongoing and does not diminish

when the child-patient either returns from hospital or dies. Pre-

existing support systems seem to be of most value to families.

A final consistency in the literature reported is an absence of

any insight into the uniqueness of the father's concerns in the family

where a child is seriously ill. Many of the articles refer to the

adaptive needs of parents, but report only conversations with mothers.

Those which refer directly to the father either do so generally, depict










his need inaccurately, or suggest that the father's behavior calls for

better understanding in order to help him cope with the family stress.

None, however, provide useful information which enables helping persons

to understand and/or respond to the particular concerns he may have.

At very worst, helping and health professionals are encouraged simply

to enlist the father as a member of the team in providing support to

the child-patient and mother, while at the same time he oversees finan-

cial costs, management of the home in the absence of the mother, and

maintains his career. A consistent gap in understanding the father

undoubtedly exists.













CHAPTER III

RESEARCH METHODOLOGY

In the effort to understand the unique concerns of fathers in

the family where a child is seriously ill a descriptive research

approach was used. The specific methodology was the research inter-

view with a semi-structured format. Fox (1969) and Isaac and Michael

(1975) discuss this method of inquiry, which includes a summation des-

cription from the latter:

These are built around a core of structured questions from
which the interviewer branches off to explore in depth.
Again, accurate and complete information is desired with the
additional opportunity to probe for underlying factors or
relationships which are too complex or elusive to encompass
in more straightforward questions. Semi-structured inter-
views require more training and skill both to probe at sig-
nificant points and to avoid biasing tendencies. (p. 96)

This method contrasts with the unstructured interview, in which no stan-

dard interview schedule exists, and with the structured interview where

little or no opportunity is provided for clarification or elaboration of

responses. Standardization was achieved through the development of an

interview schedule and the requirement that each question be asked in

the order of its listing. Opportunity for clarification and elaboration

of responses was permitted, and required an interviewer with interper-

sonal skills as well as knowledge of the research field. This meant

that interviewers were selected from among those professionals who were

members of a health care delivery team having responsibility for the










care of the child-patient and family. Such a relationship on the part

of the interviewer met ethical standards calling for continuing care

of the fathers who participated in the study.



Types of Interviewers

Three types of interviewers were used in the research study, in

addition to the participation by the author. Each of these were recog-

nized professionals in their respective fields and were often directly

involved in the care of seriously ill children and their families.

Training and experience made each of these three professional groups

attractive participants in the data gathering process.

The first type of interviewer selected paralleled closely the

training and experience of the author. This was the person of the Hos-

pital Chaplain. These professionals hold a theological or divinity

school degree beyond that of college training and have had an additional

year of full time training in a clinical setting under both individual

and group supervision. The formal name of this training is Clinical

Pastoral Education and its content includes both the study and practice

of interpersonal dynamics, in pastoral relationships and formal counsel-

ing. The history and approach of this discipline is carefully described

by Thornton in Professional Education for Ministry (1970). In addition,

because the type of patient sought is treated in specialized settings,

usually that of a research and teaching facility, these Chaplains often

have additional training such as graduate degrees in counseling.










The second type of interviewer used was the Nurse Clinician or

Clinical Specialist. This position is held by registered nurses who

often have master's level training and who work as functional parts of

the Pediatric Hematology or Oncology team. Nurses in this role do not

provide the type of care usually associated with the staff or floor

nurse. Instead, the Clinician is selected for the role because of

special skills in communication and interpersonal relationships. These

qualifications combined with a nursing knowledge of the needs associated

with serious illness make the Clinician a valuable resource in several

ways. Often, it is the case that the Specialist will serve as a liaison

between the expressed needs of both the patient-family and the medical

and nursing staff. In addition, teaching is frequently done to make

the patient-family aware of treatment side-effects, hospital culture,

emotional-adaptive issues, and crisis intervention. This person, in

addition to nursing knowledge, must be interpersonally skilled or the

role is virtually rendered non-functional.

The third type of person used as an interviewer was the Social

Worker. In the research and teaching setting, where most of the data

for this study was gathered, Social Workers are utilized in several

well-understood ways. Persons trained at the bachelor's level in this

profession are employed in hospital settings to seek funding for patients

as well as enlist support services from community agencies which facili-

tate practical/adaptive processes where illnesses have altered life-

styles. Master's level training among Social Workers is associated with a

high level of interpersonal functioning, and such persons are often










used as primary therapists in departments of Psychiatry and as thera-

peutic agents in special care areas of hospitals such as Pediatrics.

Their knowledge of the research field is on a par with that of the

Hospital Chaplain and the Nurse Clinician. It is the Social Worker

with master's level training who was involved in this study as an

interviewer.

The knowledge and skill which is common among these three profes-

sional groups, the Hospital Chaplain, Nurse Clinician or Clinical

Specialist, and the Social Worker made each a desirable role to involve

in being an interviewer. Through both the training each received and

the requirements of the position each holds, a high level of skill in

interpersonal relatedness is achieved. Practical work experience in

the care of seriously ill children had familiarized each with many of

the issues in the research field. Because of their organizational re-

lationship to the work setting and the field of study, each was in an

excellent position to provide not only follow-up care to the fathers

who participated, but also to integrate the knowledge gained into the

care of other families to whom they have responsibility.



Selection of Interviewers

The interviewers were selected through professional membership rolls

or through personal acquaintances with the author through associations

developed during the author's nine years of hospital experience. Expla-

nations of the study and clarifications of the approach to data gather-

ing were precise and are outlined in Appendix B. Hospital Chaplains










were selected from the membership roll of the College of Chaplains, a

sub-division of the American Hospital Association which accredits both

the training and skill of Chaplains. Many were acquaintances of the

author and functioned in research settings similar to that of the

author.

The Nurse Clinicians or Clinical Specialists were selected with

the assistance of a professional acquaintance of the author, Ms. Trish

Green. Ms. Green is a Registered Nurse and a Clinical Specialist in

Pediatric Oncology at North Carolina Memorial Hospital in Chapel Hill,

North Carolina. Ms. Green is the founder and past-President of the

Association of Pediatric Oncology Nurses. With her consultation, members

of this professional organization whom she recommended were especially

asked to participate as interviewers. A membership role had been pro-

vided the author and was used as a resource in addition to the assistance

of Ms. Green.

Social Workers employed in teaching and research health care set-

tings with organizational linkages to Pediatrics have no special profes-

sional organization to distinguish them. A portion of the search for

Social Workers began from the author's awareness of such individuals.

The University of California Medical Center in San Francisco, for

example, had an excellent social work representative based in the depart-

ment of Pediatrics of that institution. Such contacts, however, led to

only a few persons who were actually able to participate in the data

gathering process.










Telephone contacts between potential interviewers and the author

began in August and invitations to participants ceased when a minimum

of thirty interviewers agreed to participate. No specific percentage

of each type of interviewer was required. Each of the three profes-

sional groups was represented, although not in equal proportions:

Fifteen Chaplains, not including the author, fourteen Nurses and two

Social Workers. Appendix A contains a standardized approach which was

used to explain the study and invite each potential interviewer to

participate. When an interviewer agreed to participate, further in-

structions (Appendix B) along with five cassette tapes, five Inter-

view Data Sheets (Appendix C) and two copies of the Structured Inter-

view (Appendix D) were mailed. A follow-up telephone contact was

made after each interviewer had received this material in order to

clarify any questions or concerns. Each was asked to complete their

interviews as quickly as possible, with none to be accepted for use in

this study if received after April, 1979. A summary of the results of

this study was promised to each interviewer.



Selection of Subjects

Individual interviewers selected participant-fathers from the

current active patient-family file of their respective institutions.

Guidelines for the selection of fathers-to-be interviewed were as

follows:

1. The child-patient must be diagnosed with a serious illness
which may be life-threatening in nature, such as leukemia
or other type of cancer. Children with a serious anomaly
generally correctable by surgery, such as a heart defect,
will not be included.










2. The diagnosis of serious illness must have occurred at least
six months prior to the father's participation in the study.
This time period will usually have permitted movement through
initial feelings of shock and/or denial and into a period
where the family has begun adaptive coping efforts.

3. The child-patient should be the natural child of the father,
or legally adopted, and come from an intact nuclear family,
with husband, wife, child-patient, and siblings, if there be
any, living in the same household.

4. The time at which the father is interviewed must not be a crisis
moment associated with life-threatening stages of an illness
or other acute interventions such as surgery. The child-patient
may be in hospital at the time of the interview with the father,
but for routine and predictable reasons such as treatment.
Interviews done during out-patient visits or in the home of
the family where possible, would be most desirable.

Interviewers were asked to gather data from a minimum of five fathers.

The author was required by his institution, as was the case with many of

the interviewers, to use informed consent in seeking subjects. Such

consent involved a release form to be signed by the father and to be wit-

nessed by a person other than the researcher. Such a format, although

often standard, may have represented another limit on those who decided

to participate. Each interviewer was asked to provide a brief explana-

tion from those fathers who refused to participate.



Generalizability of Fathers

The fathers who made up the data base for this study were repre-

sentative of middle-class fathers from intact nuclear families, with

the exception of racial mix. One black and one Spanish-American father

were interviewed and no other ethnic groups were represented. There

were no teen-age fathers who participated in the study. It is likely,

however, that the sample is highly generalizable to those fathers who










actually appear at hospital. None were rejected because they were

divorced at the time of the study or because they were single parents.

The primary reason for the exclusion of fathers, when that occurred,

was the timing of their presence in the hospital, at crisis moments,

or during the diagnostic phases.



Instrumentation

The structured interview schedule used in data gathering was

developed by the author,and it is found in Appendix D. The questions

are grouped to obtain three types of information regarding the father.

Each of the three divisions is preceded by an introduction used by the

interviewer in order to focus the respondent's thinking. The first

area for exploration (questions one through five) had as its aim gain-

ing understanding into the father's use of external support systems.

External support is understood to be friends, groups, institutions

or systems other than the family of the father.

The second major area for investigation, the father's perceived

relationship to his family (question six through twelve), sought to

gain information on what shifts in family inter-relatedness the father

had experienced. These questions particularly intended to clarify his

feelings about the relationship between him and his wife.

The final area for consideration was that of how the father per-

sonally experienced the event of serious illness in his child and in

his family. Questions thirteen through eighteen provided an opportunity

for the father to explain his feelings in this area. Each of the










questions in the three general divisions was followed by response

categories which provided general organizational arenas for grouping

frequencies of types of feelings and information.

The first section of questions, exploring external support systems,

asked the father to make clear the sources of support and understanding

which were important to him, or the lack of them. He was asked to com-

pare and contrast his experience of these support systems with his

perception of his wife's experience of them. He was asked to explain

how these systems had been most useful to him and how they had been

most disappointing. Response categories (Appendix E) were most dif-

ficult to anticipate for questions four and five. Of the three sections

of questions, this researcher believed that a discussion of external

support systems was less threatening than discussion of nuclear family

relationships or the father's personal experience of the child-patient's

illness. Therefore, the section on external support systems began the

interview schedule.

The second section sought insight into the father's feelings about

his relationship with his wife, the siblings of the child-patient and

the child-patient. The possibilities for responses indicated generally

the directions which his feelings had taken toward his family. It was

anticipated, for example, that more stress was felt among all family

members. How the father's experience of this stress affected his feel-

ings for his wife could not be anticipated. Nor could his feelings

for his children, including the child-patient, be assumed. The response

categories, as illustrated in question eight, for example, did not










assume a movement in the marital relationship either toward more or

less intimacy. Specific concerns were identified as areas of impor-

tance to the father. Careful listening to his feelings about these

concerns indicated positive or negative import. Each of the concerns

represented potential for growth or deterioration in the marital re-

lationship. Should a few of these areas of concern be predominantly

cited, the awareness of them by health professionals would allow

deliberate interventions which might facilitate a positive outcome.

The final section of the interview schedule, exploring the father's

personal feelings, required the greatest amount of rapport between

interviewer and subject in order to secure meaningful data. For this

reason, these questions were reserved until the end. Several of the

questions appeared to have some overlap with questions in other sec-

tions. For example, question eighteen appears to be similar to question

one in the first section on external support systems. It was believed

by this researcher that after discussions of the earlier section,

assuming an adequate level of rapport had been established, that the

father would be most aware of his feelings and experiences during this

last section of the interview. When the two questions are carefully

compared, there is in question eighteen opportunity for more specificity.

Again, the response categories did not assume a direction either positive

or negative in evaluating concerns. Responses can be organized into

categories, but had to be listened to carefully through the audio tapes

for illustrative material which provided interpretation.










Data Collection and Recording

Interviews with the subject-fathers of necessity had to be confi-

dential in nature. For this to be accomplished, the meeting between

interviewer and father was to be held in a private setting where free-

dom of expression as well as freedom from interruption could occur.

Fox (1969) pointed out that in such an interpersonal meeting, essen-

tially two modes of data retrieval are possible. The first involves

the interviewer keeping written records as the interviewee responds.

The other method requires the use of a tape-recorder. The advantages

of the recording machine are carefully outlined (Fox, 1969):

If a thoroughly verbatim record of what the respondent says
is needed, the recorder is required, and it is preferable
even if a less than verbatim record is desired. This is
because it frees the interviewer to concentrate on his basic
role of questioner. It also frees him while the respondent
is answering to pay attention to nonverbal aspects of the
response such as body position, facial expression, and hand
movements. Moreover, freeing the questioner from the neces-
sity of writing incessantly as the respondent speaks makes it
more likely that the interviewer can establish the natural
human interrelationship so critical to success in the per-
sonal interaction. (p. 546)

Despite the possibility that the recorder might hinder to some

degree the establishment of rapport crucial to the sharing of meaning-

ful data, it was selected by this researcher as the most attractive

method of data collection. It was certainly less obtrusive than a

written recording occurring during the interview session. It was more

reliable than a third alternative which Fox does not mention and that

is the approach of the interviewer attempting to recall following each

session.










A special feature of this approach to this research study lent

further support to the use of a tape recorder. Each interviewer was

a member of the staff at the institution where health care to patient

and family was being given. Most were organizational members of the

specific department having responsibility for such cases, either the

Pediatric Hematology or Oncology division. If not organizational mem-

bers, they were frequent functional members of the care teams. As

such, it was likely that an acquaintance, if not significant level of

relationship, already existed based on an association of at least six

months prior to the occurrence of the interview. As the study was

planned it was somewhat unusual for the interview to represent a first

meeting between subject and interviewer. Such a pre-existent and con-

tinuing relationship has advantages over the one-shot nature of many

research studies and was expected to ease some of the negative concern

regarding the use of recording equipment.

Each audio recording of an interview was carefully listened to by

the author and the first classifiable response to each question was

indicated using the form outlined in Appendix E, the Response Alterna-

tive Tabulation Form. The second classifiable response was to have

been coded, but did not occur often enough to merit reporting. However,

the first classifiable response was regarded as the most immediate

concern in the awareness of the father. These data were then compared

to both the demographic data and interview information obtained from

Appendix C, the Interview Data Sheet. In order to avoid bias on the

part of the researcher, a random sample of the audio tapes will be

evaluated by other judges as well.










Data for purposes of analysis were taken from the information on

Appendixes C and D. Illustrative material facilitating broader under-

standing into the nature of response patterns to each question was

included. All useful data obtained obviously required a quality

audio recording and one easily understood. These data have remained in

the hands of this researcher and in so doing will remain confidential

as was explained and promised to the subject-fathers.



Analysis of Data

The responses to the questions from the structured interviews

yielded nominal level data since the responses were in fact categorized

by the researcher. The use of nominal level data correspondingly neces-

sitated the use of nonparametric statistical analysis. Relatedly, since

the numbers of potential response categories ranged from 2 to 7 for the

various questions, nonparametric analyses similar in purpose but dif-

ferent in form were necessary for different questions. However, regard-

less of the particular analysis used, an alpha level of .05 was used

for determining statistical significance.

The primary set of analyses for this study related to the differing

demographic characteristics of the fathers. Chi square analysis was

used to determine the significance of the relationships among (cate-

gorized) responses to each question and: (a) 4 categories of age,

(b) 3 categories of years married, (c) 3 categories of occupation,

(d) 4 categories of education, (e) 4 categories of religious preference.

For those items where the number of categories of responses was equal










to the number of categories of the demographic characteristic being

considered, contingency coefficients were also computed. For the char-

acteristic race (with 2 categories), phi coefficients were computed

when there were only 2 response categories to an item; otherwise

Chi-square analysis was used. Finally, in order to facilitate further

the understandings of the responses to the various questions, Uncer-

tainty Coefficients were computed for each item for each demographic

characteristic except age.

A second set of analyses related to the differing demographic

characteristics of the child-patient. Chi-square analyses were used

to determine the significance of the relationships among (categorized)

responses to each item and the 3 categories of course of illness. For

the characteristic sex (with two categories), phi coefficients were

computed when there are only 2 response categories to an item; other-

wise chi-square analysis was used. Again, Uncertainty Coefficients

were also computed for each of the analyses. For the characteristics

age, grade, and date from diagnosis (in months), eta coefficients were

calculated, with age, grade and date from diagnosis (in months) considered

as the dependent variables for these analyses.

The remaining set of analyses relates to family members other than

the father and the child-patient. For the characteristic number of sib-

lings, eta coefficients were calculated for each item; with number of

siblings considered as the dependent variable for this analysis. For

the characteristic wife employment status, phi coefficients were com-

puted when there were only 2 response categories to an item; otherwise










Chi square analysis was used. Chi square analysis was used to deter-

mine significance of relationships among (categorized) responses to

each item and the 4 categories of wife education. Uncertainty Coeffi-

cients were computed following each of the Chi square analyses.



Procedural Difficulties

The research methodology of this study provided some difficulties

which were not anticipated. The result of the difficulties was a smaller

data base than was anticipated. At the outset verbal pledges of one

hundred sixty possible interviews were received from thirty-two Chaplains,

Nurses, and Social Workers representing as many institutions in twenty-one

different states. Forty-nine interviews were actually collected and

came from fourteen interviewers representing thirteen institutions and

ten states. The principal investigator accomplished fourteen of these

interviews. Although the resulting sample size is certainly respectable,

the data base would have been even larger but for unexpected complica-

tions. The original goal had been one hundred interviews.

The first difficulty was related to the fact that the interviewers,

Chaplains, Nurses, and Social Workers, were generally not accustomed to

doing formal research. Telephone contacts inviting their participation

were met with not only a high percentage of acceptance, but also much

enthusiasm for both the topic and what appeared to be a reasonable

request to do five interviews. Some interviewers had anticipated the

necessity of submitting the proposal to Human Subjects Committees for

approval. None anticipated the delay in gaining approval, which










averaged approximately three months. At the time when data collection

was halted, several interviewers had still not received approval. The

first effect of this research hurdle was a keen lessening of enthusiasm

originally experienced. A few interviewers communicated that the

Human Subjects experience resulted in their completing only several

interviews instead of the original five.

A second difficulty complemented the one described above in that

Human Subjects Committees, composed largely of physicians, were un-

familiar with the interviewers in the role of researchers. They were

generally unfamiliar with an affective/interpersonal focus for study.

Some committees expressed concern for the "upset" which such a study

might cause. This concern seemed to have its genesis more from an

unfamiliar researcher, than in the subject of the study. When this

absence of trust was combined with the interviewers lack of familiarity

in guiding a proposal through committee, the result, in too many cases,

was a long delay in gaining approval or a decline to give approval.

Yet another difficulty had to do with the nature of the work of

Human Subjects Committees. They are familiar with cooperative efforts

between many institutions in doing joint research. Regional if not

nationally adhered to protocols exist in almost every medical specialty

and these must be approved by each individual institution participating.

Most proposals submitted to committees, however, are complex and not

usually understandable in content except by representatives of the

medical specialty submitting it, who may or may not be represented on

committee. Committees deal often, therefore, with proposals which










they do not understand. A certain amount of suspicion and frustration

is the result. Contrasted with the usual committee experience, the

"Father's" proposal was clear and easily understood. Some feeling was

expressed that the result of this clarity was that the proposal became

the recipient of suspicion and frustration which other protocols had

provoked.

A final difficulty was related to the reason research in this area

had not been previously completed. Many interviewers reported that

only several fathers who met the selection criteria were available

during the data gathering period. The reporting of this experience

served only to emphasize what was already known regarding the diffi-

culty of doing research in this area.



Limitations

Principal weaknesses associated with this research study related

to the methodology itself. Subjectivity and bias attributed to the

interviewer were suspect. Even when the interviewer was evaluated as

having accurately elaborated and clarified the responses of the subject,

there was the possibility that the interviewee's responses were moti-

vated by the desire to please the interviewer. As Van Dalen (1973)

points out, "The race, age, sex, religion, vocabulary, accent, ethnic

background, or social class of the interviewer may alter the responses

of the respondents. ." (p. 329). The interviewee's responses were not

only retrospective to some extent, but also represented some interpre-

tative features based perhaps on such characteristics as rationalization,










defensiveness, or wishful thinking. Memory error, contamination

of current events or other biasing factors were likely never to be

adequately understood by the researcher. Even if they were, inte-

gration of them into the data interpretation would only result in

more legitimate charges of subjectivity and bias.

Bias might be associated, as well, with the selection process

the interviewers used when involving the subject-fathers. There was

the opportunity, for example, for interviewers to select those fathers

whom they knew well and with whom they felt comfortable. Such an

exclusive approach to selection did not, in fact, occur. Question

three in Appendix C will provide summary information regarding this

concern. Somewhat related was the bias which might have resulted if

the interviewer not only had a significant level of rapport previously

established with the subject, but was the subject's primary support

system as well. Such a circumstance might then have cast the inter-

view as an indirect evaluation of the work of the interviewer. An

attempt to control bias on the part of the researcher was made by the

use of other judges to evaluate randomly selected audio tapes and to

then compare those ratings for congruence.

In spite of these potential limitations, the research interview

was chosen as the most attractive methodology for this study. In a

face-to-face meeting an investigator was able to encourage subjects

and to help them probe more deeply into a problem, particularly an

emotionally laden one (Van Dalen, p. 329). As seminal research, a

careful exploration of the information held by the subject-father





54



was crucial in a beginning effort to understand his needs. This

necessitated a knowledgeable and skilled interviewer who could be

available to follow-up the discovered needs and integrate them

into the continuing care of the subjects. Flexibility for elabora-

tion and clarification of responses not provided in mailed question-

naires and in the absence of an appropriate testing instrument left

few if any alternative research approaches.










CHAPTER IV

THE FINDINGS


Introduction

This study investigated the needs and concerns of fathers in

families where a child is seriously ill. The Statistical Package for

the Social Sciences (SPSS) was used for the various nonparametric statis-

tical applications, all variations of Chi square. The findings presented

in this chapter are (1) a description of the fathers and their families

composing the sample, (2) the types of interviewers and the number of

fathers they interviewed as well as their geographical locations, and (3)

summaries of the crosstabulations among demographic characteristics (Appen-

dix C) by each interview item (Appendix D). A full reporting of each cross-

tabulation which had statistical significance is contained in Appendix F.



Description of the Fathers

A total of forty-nine (49) fathers were interviewed using the semi-

structured interview format outlined in Appendix D. A description of the

demographic characteristics of the fathers is depicted in Table 1. Three

interviews occurred while the child-patient was at home and forty-four

took place during a period of hospitalization. Two interviews had their

setting elsewhere, one in a clinic and one in a private office. The totals

in each table do not always equal forty-nine, because some questions were

overlooked by the interviewer or the question did not apply to a specific

father or his family.









TABLE 1

DEMOGRAPHIC DATA OF FATHERS


1. AGE


Under 20

N= 0

%= (0)


20-25

2

(4.1)


26-30

6

(12.2)


31 Above

41

(83.7)


2. YEARS MARRIED


Under 5

N = 4

%= (8.2)


6-10

12

(24.5)


11 or More

33

(67.3)


3. OCCUPATION


Unskilled

N= 1

% = (2.0)


Skilled

12

(24.5)


Professional

36

(73.5)


4. EDUCATION LEVEL


H.S. Diploma

6


(12.5)


Some College

17


(35.4)


College Degree

23


(47.9)


5. LEVEL OF INCOME


$11-15,000

12


$16-20,000

11


% = (10.4)


(25.0) (22.9)


$21,000 Above

20

(41.7)


Some H.S.

2


%= (4.2)


$5-10,000

5







TABLE 1 (Continued)


6. RACE


7. RELIGIOUS


Caucasian Ethnic Minority

N = 46 2

% = (95.8) (4.2)



PREFERENCE


Jewish Catholic Protestant None Greek Ortho

N = 0 10 33 5 1

% = (0) (20.4) (67.3) (10.2) (2.0)



8. WIFE'S LEVEL OF EDUCATION

Some H.S. H.S. Diploma Some College College Degree

N = 3 13 21 12

% = (6.1) (26.5) (42.9) (24.5)



9. COURSE OF CHILD'S ILLNESS

Feels Well Cyclical Chronic Interruption

N = 24 17 8

% = (49.0) (34.7) (16.3)



10. DIAGNOSIS OF CHILD-PATIENT

Cystic
*Leukemia Fibrosis **Cancer Burn Renal ***Other

N = 18 4 15 1 3 8

% = (36.7) (8.2) (30.6) (2.0) (6.1) (16.3)

Leukemia included Acute Myelocytic (AML) and Acute Lymphocytic (ALL)
** Cancer included Blastoma, Lymphoma, and Sarcoma
*** Other included birth defects (e.g. Spina Bifida, Liver Disease,
Kartager's Syndrome and Werding-Hoffman Disease


r





58




Types of Interviewers

Three types of interviewers were used to gather data for the study.

Each of these three roles worked closely with the Pediatric staff respon-

sible for the child-patient's care. In twenty-six interviews there

existed an established rapport between the interviewer and the father.

Table 2 shows the number of each type of interviewer and the number of

fathers each interviewed. The geographical setting for the interviews

is shown in Table 3.



TABLE 2

DESCRIPTION OF INTERVIEWERS


1. TYPES OF INTERVIEWERS

Chaplains Nurses Social Workers

N= 5 7 2

% = (36.0) (50.0) (14.0)



2. NUMBER OF FATHERS INTERVIEWED

Chaplains Nurses Social Workers

N = 25 21 3

% = (51.0) (43.0) (6.0)













GEOGRAPHICAL



Geographical Setting

Alabama


California


Florida


Iowa


Kentucky


Missouri


North Carolina


Tennessee


Texas


Virginia


TOTAL


TABLE 3

SETTING OF FATHERS AND INTERVIEWERS


# of Fathers

1
(2.0)

3
(6.0)

14
(29.1)

6
(12.1)

4
(8.2)

5
(10.2)

7
(14.2)

3
(6.0)

2
(4.0)

4
(8.2)

49
(100.0)


Chaplain Nurse Social Worker

1


3


1


25
(51.0)


5


5


3


2


3


21
(43.0)


2










3
(6.0)










Crosstabulation Analyses

Three sets of analyses were done relating the demographic char-

acteristics of the father, child-patient, and other family members

to each interview item. Chi square analyses were computed in each

case, and where appropriate, other related nonparametric analyses

were done. Regardless of the particular analysis used, an alpha level

of .05 was used for determining statistical significance. Tables 4

through 18 summarize the findings. An asterisk following the Chi

square value indicates statistical significance.

It is important to note in reviewing Tables 4 through 18 that there

is a minimum of significant statistical relationships among the demo-

graphic characteristics (Appendix C) of the father, child-patient, other

family members and each interview question (Appendix D). The maximum

number of statistically significant relationships in any table is five,

which occurs in Table 6. The response item which is most often signi-

ficantly associated with demographic categories is question 14 (Appendix

D), which asks the father "With whom do you most often discuss these

concerns?" It appears in seven of the fifteen tables. Predominantly,

however, responses are unique to the demographic characteristics. Four

tables (8,12,13,15) have no instances of statistical significance. Two

tables (9,18) have one instance each. There appear to be no other note-

worthy patterns other than question 14.












TABLE 4

ITEMS BY FATHER'S AGE


Uncertainty


Uncertainty
Coefficient

0.26122

0.14191


Contingency
Coefficient


0.31091


INTERVIEW


Item #

1

2

3

4

5

6

7

8

9

10

11

12

13

14

15

16

17

18

*P < .05


X2

11.58768

9.68077

0.85867

5.24330

12.94358

1.79268

4.98057

41.90004*

0.74501

4.52940

0.62354

12.49586*

14.94325*

9.05024

2.60918

2.96182

4.60921

1.24875











TABLE 5

INTERVIEW ITEMS BY NUMBER OF YEARS MARRIED


2 Uncertainty Contingency
Item # X df Coefficient Coefficient

1 9.70856 12 0.14406

2 8.09790 6 0.09736

3 1.21715 4 0.02257 0.15568

4 5.74068 10 0.07697

5 6.04486 12 0.08614

6 3.05687 4 0.04042 0.24233

7 2.67170 6 0.04125

8 21.36960* 12 0.28023

9 0.29752 2 0.00732

10 4.74142 4 0.06512 0.30568

11 1.29117 4 0.02058 0.16023

12 10.96263* 4 0.16392 0.44661

13 6.42907* 2 0.06670

14 7.70979 8 0.09999

15 3.75041 8 0.04686

16 6.84321 4 0.07566 0.35006

17 8.99067 8 0.09845

18 3.65977 6 0.05435

*P <.05











TABLE 6

INTERVIEW ITEMS BY FATHER'S OCCUPATION


Item #

1

2

3

4

5

6

7

8

9

10

11

12

13

14

15

16

17

18

*P < .05


Contingency
Coefficient


X2

14.97339

2.17582

0.97721

1.93491

18.85237

5.15572

2.14366

20.58234

11.37190*

3.27039

1.09481

3.28078

6.42907*

30.93893*

4.35339

1.09481

19.08168*

19.82330*


Uncertainty
Coefficient

0.27243

0.04197

0.02584

0.04104

0.16090

0.10537

0.03930

0.25489

0.08849

0.05679

0.02017

0.05257

0.09253

0.21581

0.06850

0.02017

0.21511

0.15590


0.13983





0.30855







0.25764










0.14783











TABLE 7

INTERVIEW ITEMS BY FATHER'S EDUCATION LEVEL


2 Uncertainty Contingency
Item # X df Coefficient Coefficient

1 16.21492 18 0.16557

2 6.91953 9 0.08753 0.35496

3 3.95977 6 0.04400

4 20.33650 15 0.22330

5 17.92816 18 0.16670

6 11.59400 6 0.13769

7 9.53791 9 0.09572 0.40365

8 27.58118 18 0.24170

9 5.18182 3 0.03312

10 1.92067 6 0.02224

11 12.82699* 6 0.06538

12 7.56797 6 0.07794

13 3.67449 3 0.03417

14 47.04128* 12 0.21416

15 7.16775 12 0.07665

16 1.54822 6 0.02073

17 13.35891 12 0.12101

18 11.11061 9 0.08450 0.42993

*P < .05













INTERVIEW ITEM


TABLE 8

BY FATHER'S


LEVEL OF INCOME


Item #

1

2

3

4

5

6

7

8

9

10

11

12

13

14

15

16

17

18


X2

17.85669

9.46117

6.62232

16.04668

13.61348

9.88661

5.52687

22.89008

2.61818

2.78654

7.36775

5.13443

5.15195

18.43776

14.78425

6.55108

12.93428

11.34957


Uncertainty
Coefficient

0.19482

0.10837

0.05488

0.12928

0.13556

0.09708

0.05762

0.19658

0.02594

0.02654

0.05200

0.04506

0.03822

0.11012

0.13736

0.05200

0.11461

0.10733


Contingency
Coefficient



0.40579








0.31837




















0.43366











TABLE 9

INTERVIEW ITEMS BY FATHER'S RACE


df


Contingency
Coefficient Phi


Item #t

1

2

3

4

5

6

7

8

9

10

11

12

13

14

15

16

17

18

*P< .05


X2

2.06141

2.08696

0.53464

0.91990

8.76521

1.01096

2.90817

10.68616

0.75889

0.51016

0.13599

0.88645

0.0

11.34111*

3.59102

0.13599

5.21276

7.08402


Uncertainty
Coefficient

0.16784

0.17198

0.05593

0.08970

0.37930

0.09707

0.18759

0.46162

0.15537

0.03057

0.01545

0.06715

0.01019

0.27753

0.21428

0.01545

0.21452

0.21491


0.31435






0.04255


0.29988






0.04251










TABLE 10

INTERVIEW ITEMS BY FATHER'S


RELIGIOUS PREFERENCE


Item #

1

2

3

4

5

6

7

8

9

10

11

12

13

14

15

16

17

18

*P < .05


X2

21.48186

20.76537*

8.95144

23.62448

18.99532

6.16999

9.60458

13.01335

7.74545

5.57628

9.69347

6.23062

1.01096

29.26285*

8.85193

4.90968

10.92546

3.98434


Contingency
Coefficient


Uncertainty
Coefficient

0.24010

0.16234

0.07923

0.19122

0.18457

0.08011

0.10329

0.13772

0.06664

0.06510

0.09726

0.05740

0.01833

0.20042

0.11896

0.05424

0.14069

0.05745


0.54952








0.40483





0.32881














0.27422











TABLE 11

INTERVIEW ITEMS BY NUMBER OF SIBLINGS


Item #

1

2

3

4

5

6

7

8

9

10

11

12

13

14

15

16

17

18

*P< .05


X2

28.91556

13.79590

9.13310

18.11754

41.05635

4.11708

15.27885

33.14372

7.42384

10.65978

19.06322*

20.41818*

2.78014

46.84203*

19.76591

6.22529

14.46852

22.38148


Eta

0.36221

0.43730

0.11112

0.18453

0.29673

0.21101

0.12337

0.29893

0.22289

0.08575

0.37572

0.15837

0.18866

0.45430

0.21132

0.19367

0.27415

0.29131











TABLE 12

ITEMS BY WIFE'S EMPLOYMENT STATUS


df


Contingency
Coefficient Phi


Item

1

2

3

4

5

6

7

8

9

10

11

12

13

14

15

16

17

18


ft


INTERVIEW


--------


X2

2.00679

4.78846

1.06337

4.77480

8.93077

2.14853

6.64783

8.84633

0.0

0.44823

0.75856

1.46611

0.05553

5.91678

4.60921

1.54941

5.86265

1.36944


Uncertainty
Coefficient

0.03039

0.09696

0.02702

0.08333

0.15998

0.03692

0.13774

0.08947

0.00233

0.01303

0.01692

0.02578

0.02620

0.13267

0.09371

0.03983

0.11087

0.02843


0.05330







0.14364


0.05322







0.14218











TABLE 13

INTERVIEW ITEMS BY WIFE'S EDUCATION


2 Uncertainty Contingency
Item # X df Coefficient Coefficient

1 21.62047 18 0.19900

2 15.77878 9 0.13404 0.49739

3 8.87094 6 0.06931

4 13.95952 15 0.12424

5 18.62634 18 0.16562

6 6.74062 6 0.06976

7 10.90625 9 0.10961 0.42668

8 18.06715 18 0.17045

9 3.70909 3 0.03221

10 2.95636 6 0.02915

11 4.00334 6 0.03661

12 4.23258 6 0.05135

13 1.09602 3 0.01343

14 14.35667 12 0.10608

15 8.43286 12 0.08022

16 4.26086 6 0.04433

17 11.29844 12 0.10182

18 10.62195 9 0.08121 0.42208











TABLE 14

INTERVIEW ITEMS BY CHILD PATIENT AGE


2 Uncertainty Contingency
Item # X df Coefficient Coefficient Eta

1 129.03253 108 0.37978 0.29723

2 50.68954 54 0.19194 0.28142

3 25.47609 36 0.09020 0.58487 0.10031

4 66.82660 90 0.17261 0.36886

5 98.67630 108 0.27306 0.16600

6 31.30531 36 0.10305 0.62436 0.02690

7 80.21074* 54 0.27213 0.49605

8 119.60390 108 0.31765 0.43290

9 29.45439* 18 0.07152 0.06475

10 27.83202 34 0.11194 0.61397 0.15098

11 64.76509* 36 0.06777 0.75451 0.35973

12 35.89653 36 0.16431 0.67029 0.48288

13 31.97127* 18 0.04694 0.25951

14 85.95860 72 0.14315 0.38249

15 80.86240 72 0.26685 0.17992

16 21.73007 36 0.04758 0.55428 0.19101

17 89.13495 72 0.20275 0.21683

18 47.37685 54 0.11864 0.27419

*P < .05













INTERVIEW ITEMS


Item #

1

2

3

5

5

6

7

8

9

10

11

12

13

14

15

16

17

18


TABLE 15

BY SEX OF CHILD


X

5.89122

5.39645

0.96096

5.22808

4.61185

5.29071

6.84801

8.96530

0.12206

1.48068

2.82692

2.72092

0.0

2.05480

1.47264

1.16853

0.46643

2.05480


- PATIENT


Contingency
Coefficient Phi


Uncertainty
Coefficient

0.10472

0.08317

0.01424

0.09037

0.08296

0.08033

0.10474

0.17256

0.01214

0.02935

0.05868

0.04542

0.00012

0.04162

0.02237

0.02289

0.00689

0.03621


0.12607







0.01265


0.12508







0.01265











TABLE 16

INTERVIEW ITEMS BY CHILD PATIENT'S GRADE IN SCHOOL


Item #

1

2

3

4

5

6

7

8

9

10

11

12

13

14

15

16

17

18

*P< .05


X2

93.38876

51.49492

28.58501

50.92744

71.64261

21.61415

63.14346*

79.67227

17.79012

15.18092

76.69554*

25.34424

5.21275

84.33624*

59.23846

15.14129

63.11853

43.30855


Uncertainty
Coefficient

0.33401

0.20614

0.11333

0.17952

0.25172

0.10813

0.27029

0.26968

0.05930

0.08847

0.09122

0.13574

0.02273

0.17073

0.23532

0.04070

0.17625

0.12032












TABLE 17

INTERVIEW ITEMS BY COURSE OF ILLNESS


2 Uncertainty Contingency


Item #

1

2

3

4

5

6

7

8

9

10

11

12

13

14

15

16

17

18

*P< .05


~


__


2
x
X

16.19919

4.83946

6.79131

16.91705

20.57938

2.45655

11.83652

9.32760

6.19709*

11.35717*

2.44373

5.19340

2.61021

16.60431*

9.88235

3.58988

10.39111

4.01558


Uncertainty Contingency
df Coefficient Coefficient

12 0.20455

6 0.04651

4 0.08160 0.34889

10 0.19661

12 0.17685

4 0.03762 0.21850

6 0.12035

12 0.09528

2 0.07167

4 0.12039 0.44498

4 0.03012 0.21795

4 0.06188 0.32492

2 0.03100

8 0.14976

8 0.10982

4 0.04476 0.26127

8 0.12727

6 0.05599











TABLE 18

INTERVIEW ITEMS BY DIAGNOSIS OF ILLNESS


Uncertainty Contingency


Item #

1

2

3

4

5

6

7

8

9

10

11

12

13

14

15

16

17

18

*P< .05


X2

28.32021

17.32697

13.96315

13.77790

25.15019

3.84617

23.08484

30.40277

6.01558

9.73953

12.44529

6.90129

2.52674

20.08153

41.05362*

9.17270

30.89780

12.09293


Uncertainty Contingency
Coefficient Coefficient

0.23353

0.13026

0.08532

0.10210

0.17675

0.03259

0.18399 0.56590

0.19745

0.04334

0.07788

0.04699

0.06089

0.02039

0.11072 0.53916

0.22430

0.05608

0.19498

0.08549










Summary

Forty-nine fathers of seriously ill children were interviewed

by Chaplains, Nurses and Social Workers in ten states to gain insight

into the impact of the child's illness upon the father's experience

of external support systems, his relationship to his family, and his

personal feelings. The fathers represented intact nuclear families,

and the child-patient had been diagnosed at least six months prior to

any interview. With the exceptions of ethnic minorities, single-parents,

and geographical locations in the northeast and northwest, the sample

was representative of fathers usually met in hospital.

Crosstabulations of the demographic characteristics and each inter-

view item was done using variations of the Chi square, with an alpha

level of .05, to determine statistical significance. A scattering of

significant findings appears in the crosstabulations. No patterns were

apparent and it was determined that the responses of the fathers on each

interview item are predominantly independent of the demographic char-

acteristics.













CHAPTER V

DISCUSSION AND CONCLUSIONS


Introduction

A semi-structured interview format was used to gather data from

forty-nine fathers of children with serious illnesses. The fathers

came from intact nuclear families where the child-patient had been

diagnosed at least six months prior to the interview. With two excep-

tions the fathers were Caucasian. Economically, the fathers represented

all levels, though they were predominantly middle-class. They resided

in ten different states, with no fathers from the northeast or northwest

being included in the study. With few exceptions then (e.g., single-

parent families, ethnic minorities, geographical limitations), the data

are generalizable to the types of fathers usually met in a hospital.

Thus, the needs and concerns identified should be useful to a variety of

health and helping professionals involved in working with seriously ill

children and their families.



Summary of the Findings

Statistical analyses using variations of Chi square were done

relating each demographic characteristic (Appendix C) to each interview

item (Appendix D). As was indicated earlier, these analyses indicated

only a few significant findings, suggesting that the response items were

largely unique and independent of the demographic characteristics.










Understanding of the father's needs and concerns is gained primarily,

therefore, through discussion of each question and the trends and/or

variety of responses which were given. Question fourteen, which asked,

"With whom do you most often discuss these concerns?" appeared in nine

of eighteen tables as being significant. Otherwise, no predominant

patterns existed. Four of the eighteen tables indicated no significant

relationships whatsoever.



Discussion
The interview schedule (Appendix D) was divided into three sections,

external support systems, relationship to family, and personal experience

of the father. Each of the questions in each section will be summarized

and highlighted as to the special emphases given by the fathers. A

summary of the most striking findings in each section is also included.

Section One: External Support Systems

Questions one through five of the Interview (Appendix D) focused

on the father's relationship to external support systems. "Support

systems" were defined as any group, individual, agency, or institution,

other than immediate family members, which had been helpful to the

father and/or his immediate family. Each of the questions in this sec-

tion will be reviewed and the important findings and trends discussed.

Question One, "Other than your immediate family, what group, individual,
agency, institution has been most understanding and supportive of you?"

When compared with each of the demographic characteristics, this

question was not statistically significant in any table. Response

frequencies indicated that the fathers were almost equally divided










between citing the hospital staff and their churches as being the most

helpful support systems. However, experiences which made these two

groups most useful varied from father to father. For example, hospital

staff was variously cited as "being most familiar and understanding

regarding the illness," "teaching us what to do," "putting us in touch

with sources of financial help." Similarly, fathers expressed many

helpful interventions from the church: "They provided us financial

assistance," "The pastor was particularly understanding," "a Sunday

School class took special interest," or "My faith meant more than any

individual church member or church group."

Perhaps the most surprising finding from this question was that

fathers were quite disappointed in the support they received from persons

whom they regarded as friends. Although most fathers had turned to their

friends for support, most found them to be "well meaning, but usually not

helpful." By this comment fathers generally meant that friends tried to

be helpful but they did not understand; they tried to "make everything

okay instead of just caring for us." Consequently, false encouragement,

misinformation regarding prognosis of illness, and, at times, "total

abandonment" marked the responses most fathers experienced from friends.

On fewer occasions fathers guessed that some friends stayed away either

becuase they falsely believed that the child's disease was contagious

or that they were so uncomfortable that they opted to maintain distance,

feeling that "leaving us alone at such a time was the best thing."

When they were available, such groups as fellow workers, various

parent groups with similar problems (cyctic fibrosis, leukemia), or

agencies like the American Cancer Society were indicated as helpful.










Schools were not mentioned, either as being supportive or disappointing.

Extended family members were generally pointed to as being similar to

friends in that they tended to encourage falsely.

Question Two, "Has this personal support system been as useful to your
wife as to you?"

Statistical significance was related to the demographic character-

istic of the Father's Religious Preference. Thirty-seven (77%) of the

fathers indicated that support systems useful to them had been as helpful

or more helpful to their wives. More Protestant's tended to think that

support systems were more useful to their wives.

Reasons why wives were understood by their husbands to receive

the same or more attention varied. Several indicated that their wives

both "needed" and asked for more attention. Others suggested that wives'

"extroverted nature" made people "feel more comfortable" in offering

support, or that wives were also "at the hospital more often," "more

religious," or "involved in supportive groups as a formal member."

Question Three, "Do you feel that you have personally received as much
care and attention from the hospital staff as has your wife?"

When compared to each demographic characteristic of the fathers,

this question elicited no statistically significant relationships.

However, a review of the responses is most interesting. Thirty-nine

(79.6%) indicated they felt as much support from the hospital staff as

did their wives. However, commentary on their "yes-no" responses in-

dicated a somewhat different perspective. Most fathers felt distinctions

existed between their experience of hospital staff support and their

wives' experience. For example, fathers felt they had to take more










initiative to get support. Many indicated they were given factual

information regarding their child's illness, but received "little emo-

tional support." That type of help seemed to be reserved for their

wives.

Those fathers who indicated they had not received as much support

as their wives usually cited the same reasons as in Question Two when

asked to elaborate (e.g., wives were more outgoing and available for

help). In addition, they emphasized the difficulty staff had in re-

lating to them. Many fathers felt "treated like a visitor," "my wife

was allowed to stay with our child, but I was not," "nurses were uncom-

fortable with me. .perhaps it was a man-woman thing." A few fathers

were asked to be supportive of their wives and were assigned this role

by hospital staff. Many responded to the distance they experienced

from hospital staff by looking to their wives for understanding of

disease process, treatment interventions, and day-to-day progress or

developments. Those fathers who took initiative and were more assertive

developed rapport with staff.

Question Four, "What has been most important and most useful in support
systems other than your family?"

Seventy percent (34) of the fathers interviewed indicated that

"feeling cared for" was the most useful experience of external support

systems. The illustrations they gave of instances which symbolized such

care were varied. The nature of their experience of care seemed to take

two directions, however. First, they interpreted actions which were

never discussed with a person but which met their needs as being evidence










of care. For example, many fathers said their "boss never said anything

about absences from work." Secondly, and even more pronounced, were

their examples of persons or groups taking initiative toward them.

This initiative was shown in the forms of direct inquiries regarding

the ill child, invitations to social events which met the father's needs

to be included in community, or information coming from hospital staff

without it having to be sought.

Question Five, "What has been most disappointing to you about your
support systems?"

A majority of the fathers (54%) said that they felt no disappointment

in their external support systems. Six of these twenty-six subjects

offered the insight that they "never expected much from people anyway,"

as an explanation of their lack of disappointment. Many experiences

were given by the remainder of the fathers, most of which evidenced a

lack of understanding of their needs. They were "treated differently

by friends" after their child was diagnosed. This usually meant being

abandoned through not being included in activities, playmates for the

child-patient no longer being allowed to visit by their parents, or

being given false hope and encouragement. Most of the fathers made it

clear that even with good support the experience was "terribly lonely."

The difficulties were far greater, however, when they felt an absence of

understanding from their external support systems.

Both hospital staff and the church were the most frequently men-

tioned external support systems experienced positively by the fathers

interviewed. The church represents a support base which existed prior










to the illness and the hospital represents a new set of relationships.

It is difficult to assess clearly, however, just how supportive these

groups were to the direct needs of the father. It is clear that he be-

lieves his wife experiences them more frequently and the focus of that

experience is her emotional needs. Fathers were quick to explain that

when they sought the help, it was usually made available to them by

hospital staff. At times, it was less comfortable for them since the

staff persons they most often interfaced with were nurses. And this

fact added a "man-woman" dimension to emotional concerns that was not

present for their wives. Fathers did not experience health care or

helping persons taking initiative toward them.

With several exceptions, such as where fathers were heavily defended

psychologically, all wanted the experience of feeling cared for despite

the fact of their child's illness. The most disappointing source of

care for them were persons they had regarded as friends. Many felt

the child and wife, in addition to themselves, had been abandoned. They

tried to understand the response of friends, but seemed to implicitly

interpret this change in friend's behavior as relating to their (the

father and his family) having less worth and usefulness than before. This

feeling would certainly impact negatively upon their self-image and at

a time when their sense of personal strength was more fragile. As one

father expressed it,

I think it helps both of us to know that these kinds of people
care and they care, not just in the initial finding out, but
they keep caring, and giving support and letting you know that
they're thinking about you. That counts for quite a bit, I
think, even if there's nothing they can do.










Section Two: Father's Relationshipto Family

Questions six through twelve attempted to elicit understanding

of how roles and relationships within the nuclear family had shifted

in the experience of the child-patient's illness. Each question will

be discussed and the major highlights summarized.

Question Six, "How has your child's illness affected your relationship
with your wife?"

No statistically significant relationships appeared in the cross-

tabulations of this question with any of the demographic characteristics.

Thirty-three of the fathers (67%) felt their marital relationship had

been strengthened while 25% felt it had been weakened as a result of

the child's illness. Of those expressing positive implications, several

indicated the illness had literally "saved" the marriage. Where the

strengthening was less dramatic, it was nevertheless of great importance

to the quality of the relationship. For example, "we now have more

mutuality in decision-making," "we value the relationship more, even

though there is less time for it," "it forced us to grow up and realize

what things were really valuable to us." A few of the fathers acknow-

ledged that while the relationship was better they were not sure if

the reasons for improvement would have a lasting nature if the child

died. For example, one father indicated he and his wife had contracted

to make the child happy "whatever the cost to time, energy and resources."

This left them little time for one another. Several other fathers

realized that the relationship was stronger, but not marked by as much

happiness as before: "We worry all the time about what might happen."










Where deterioration had occurred in the relationship between husband

and wife, reasons usually cited had to do with communication and time.

Communication was most difficult in cases where the father felt a dif-

ferent understanding of the child's illness existed between him and his

wife. If he accepted the reality of the serious diagnosis and his wife

was denying it, meaningful communication was not possible. One of the

consequences of this was that what the fathers termed "normalcy" (behavior

approximating the home atmosphere prior to illness) was not possible.

This was primarily true in illnesses such as cystic fibrosis where so

much time and energy in care was required. Less time together between

husband and wife left many fathers feeling neglected, if not rejected.

Not a few fathers hinted they felt jealous of, and competitive with,

the child-patient over the wife's attention.

Question Seven, "What changes, if any, have occurred in your roles as
husband and wife?"

This question produced statistical significance when related to

two of the demographic characteristics, the child-patient's age and

grade-in-school. The apparent relationship is that the younger the

child (particularly when the child's age means pre-school or kinder-

garten), the greater are the changes in the roles of both husband and

wife, particularly the husband, according to the father's interviewed.

The changes in each of their roles were viewed as being both positive

and negative in nature.

Where changes in roles were cited as being greater for the wife,

it was generally meant that domestic responsibilities lessened as care

for the child-patient increased. The most major shift was focused in










the wife's giving up of her career shortly after diagnosis. Where

this had occurred, fathers indicated a sense of loss for their spouses

in having made that decision. Greater change in the father's role

usually meant that he had become more involved in the parent role and

had assumed responsibility for many domestic duties such as house-

keeping, cooking, shopping, and running errands. Where change in roles

was regarded as being mutual, there was an increased appreciation for

the responsibilities each enacted and a more equal sharing of those,

both toward the children and in running the household.

Question Eight, "What specific concerns/issues have developed in your
relationship with your wife?"

Statistically, there was a relationship between the age of the

father, the number of years he had been married, and the types of

concerns he sensed having developed in the relationship with his wife.

Predominantly, concerns in the area of support/understanding and per-

sonal values seem paramount for the older fathers who have been married

longer.

Concerns expressed in these two areas meant that problems had

been solved by mutual support or that problems existed due to a lack

of clarity as far as the father was concerned. Unsolved problems were

in the majority. For the father, they centered in the feeling of his

wife being too preoccupied with the child's illness and he feeling

abandoned. The fathers tended to feel they were no longer needed as

much by their spouses, particularly in the amount of exclusive time

they had to share together. Always on the agenda was encouraging their

wives to be less involved with the child-patient. One father stated,










"My wife says that her life will be without meaning if our child dies.

What's going to happen to us? Will our whole family disintegrate over

this?" Inherent in this not untypical statement was a sense of helpless-

ness felt by most fathers. When this was coupled with their feeling of

not being needed or of being lonely, what emerged was the picture of

a vulnerable person for whom stress levels are unusually high.

In fewer cases, additional concerns were added to this scenario.

For example, sexual contact between some spouses was minimized due to

either a feeling of guilt over having procreated a child who became

seriously ill or due to fear of another pregnancy. Usually, the fathers

felt it was the wives who withheld sexual attention. Another concern

occurred when fathers were making career decisions. Many had found it

necessary to limit progress in their careers or to avoid desired career

changes in order to either retain insurance benefits or to remain geo-

graphically close to treatment centers. Concern for money was a portion

of the career concern, but surprisingly less so than the need to progress

in achievement.

Question Nine, "Were these concerns/issues experienced prior to your
child's illness or are they new to your marriage?"

An alpha level of less than .05 was reached using Chi square when

this question was related to the demographic characteristics of father's

age, the child-patient's age, and the course of illness. Forty-four of

the fathers (92%) indicated that these concerns were new to the marriage.

Interpreting the frequency distributions of each of these crosstabulations

is not indicative of a dependent relationship, necessarily. Most of the

child-patients were younger, while the fathers were predominantly older










in age and were professional persons by occupation. Perhaps these

characteristics are being reflected in the analysis. The few regis-

trations of feeling that the concerns were not new were made by fathers

whose children had been seriously ill since birth which in turn closely

followed their marriage. Cystic fibrosis and spina bifida are two

examples of such illnesses included in the study.

Question Ten, "Have you found yourself relating to the child-patient
in ways that you did not prior to the illness?"

A significant relationship, statistically, exists between this

question and the course of the child-patient's illness. It appears

that fathers are more involved when the child-patient generally feels

well and experiences few restrictions in life-style. Fathers who indi-

cated no change reflected the presence of lona-term chronic illnesses

having existed since birth. Patterns of involvement or lack of involve-

ment had been long established. Only one incident of less involvement

was reported and that father expressed a strong competitive component

with the child-patient for the wife-mother's attention.

Where increased involvement was predominant, an initial expression

invariably took the form of over-protection or special treatment for

the child-patient. This occurred to the detriment of the wife or other

children, initially, for the father. However, he soon seemed to correct

this pattern, with few exceptions, and generally experienced his wife

as having more difficulty than did he. He perceived his increased in-

volvement as a mature response, feeling that the assumption of time

together could not be taken for granted and should be involved in as

many aspects of the child's life as possible. At times this meant










increased tolerance for age-appropriate behavior, more patience with

the child's involvement in activities, and deliberately being less

preoccupied at work in order to have energy for the family.

Question Eleven, "What are your feelings about the child-patient?"

As was true in question nine, the statistically significant rela-

tionship indicated with this question and the demographic characteristics

of the father's education level, the number of siblings, the child-

patient's age, and the child-patient's grade in school appear ques-

tionable. Contrary to the statistical significance, the responses of

the fathers appear to be independent of any demographic differences.

In each of the demographic characteristics where significance was indi-

cated, one particular aspect of a characteristic is predominantly repre-

sented. Although this represents an imbalance in the data, that portion

of the sample not in majority representation follows the same response

pattern on the interview item, Question Eleven.

Ninety-four percent of the fathers express love for their children

who are seriously ill. In relationship to this emotion, they give

commentary which illuminates their feeling. "I'm proud of my child."

"I struggle to treat her normally." "I'm so afraid we'll lose him."

One father whom this researcher interviewed became tearful and began

to cry when this question was asked. He remarked that it had been

"twelve years since I've cried." The last time was when his son was

diagnosed. The absence of tears had not meant lack of feeling. He

simply had not taken or been given the opportunity to express his

feelings in the presence of another person.




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