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This is to certify that the

thesis entitled

A Heuristic Study
of the Impact of the Critically Ill Neonate
Upon the Parent

presented by

Mary E. Robertson

has been accepted towards fulfillment
of the requirements for

M-A- degree in EhilrLlleyelopment

 

    

 

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Date W

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

 

 

 

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Copyright by
MARY ELIZABETH ROBERTSON

1983

A HEURISTIC STUDY
OF THE IMPACT OF THE CRITICALLY ILL NEONATE
UPON THE PARENT

By

Mary E. Robertson

A THESIS

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

MASTER OF ARTS

Department of Family and Child Ecology
1983

ABSTRACT

A HEURISTIC STUDY
OF THE IMPACT OF THE CRITICALLY ILL NEONATE
UPON THE PARENT

By

Mary E. Robertson

While neonatal intensive care has made tremendous strides in reducing the
morbidity and mortality rates for infants, this has not occurred without many
iatrogenic repercussions. Among other things, it has become apparent that this
population is at greater risk for various manifestations of parenting dysfunction.
In order to provide optimal care to the newborn and his family, detection and
elimination of the basic causes of these disorders is essential.

This thesis was heuristic in nature and was initiated to explore the
psychological affects of an ill neonate upon the parent. Based upon a
comprehensive review of the literature as well as responses to a questionnaire by
parents whose infant had required intensive medical care, research questions and

possible interventions were identified for future study.

This thesis is dedicated to my mother, Marie Robertson, my friend, the late
Charlie Doolittle, and to my husband, Robert S. Fox, who encouraged and

supported me through their love and faith.

ii

ACKNOWLEDGMENTS

I wish to thank Dr. Robert P. Boger and Linda Spence R.N. for all of their

assistance, flexibility, and support in the writing of this thesis.

iii

TABLE OF CONTENTS

LISTOFTABLES . . . . . . . . . .....
Chapter
I. ..........
Introduction ...... . . . .....
Purpose . .........

II.

III.

Significance . . . . . .

Study Objectives . - . .

Major Study Questions . . . .
Operational Definitions . ...... . .
Conceptual Framework . . . . .....

HEURISTIC EXAMINATION OF THE LITERATURE

The Tasks of Pregnancy
Attachment

The Environment . . . . . .
The NICU Staff ......
Parental Reaction .
Altered Transactions ooooo
Parent-Infant Transactions
Interventions ..... .
Extended Family Concerns

The Discharge -

THE QUESTIONNAIRE

Purpose . .

Sampling

Procedure . . .

Results.. .. . . . .....
Limitations

Discussion. - . - . . .

iv

Page

vi

abwaI—‘i—n

13

13
13
29
33
36
41
45
51
54
56

58

58
58
59
59
73
74

Chapter Page

IV. CONCLUSIONS.................... 77

Implications for Practice ..... . . . . . . . . . 77

The Environment. . . . . . . . . . . . . . . . . . 77

The NICU Staff . . . . . . . . . . . . . ..... 80

Parental Reactions ....... . . . . . . . . . . 86

Parent-Infant Transactions . . . . . . . . . . . . . 88

Extended Family Concerns . . . . . . . . . . . . . 89

Interventions ...... . . . . . . . . . . . . . 90

Summary . . . . . ...... . . . . . ..... 101

APPENDICES...-.-.. ............ 103
Appendix . . . . . . .......

A. TheCoverLetters .. .. .. .. 103

B. The Questionnaire . . . . . . . . . . . . . . . 106

BIBLIOGRAPHY .......... .. 112

Table

LIST OF TABLES

Parental Response Frequencies to Question 1 .

Parental Response Frequencies to Question 2 .

Explanation of Scales Used . . . . . .
Mean Parental Responses to Question 4
Mean Parental Responses to Question 6
Mean Parental Responses to Question 7
Mean Parental Responses to Question 10 . .

Mean Parental Responses to Question 11 .

vi

Page
61
63
64
65
66
68
70

71

CHAPTER I

Introduction

The growth of the Neonatal Intensive Care unit (NICU) would seem to be
an excellent example of the physics principle which states that for every action
there is an equal and opposite reaction. Sophisticated treatments and equipment
have been developed which are geared to the unique needs of the neonate.
Tremendous strides have been made in this field in reducing the morbidity and
mortality rates for this population. In the wake of such accomplishments,
however, have come many iatrogenic repercussions. In addition to the many
physical problems which have arisen from current treatments, it has also become
apparent that this population is also at greater risk for child abuse, non-organic
failure to thrive and other manifestations of parenting dysfunction. It is
essential that the treatment of these iatrogenic problems be directed at the
cause and not simply at the manifest symptoms. In order to provide optimal care
for the ill newborn and his family, conscientious monitering of policies,
procedures, and existing modes of therapy must be maintained. Detection and
elimination of these unwanted side effects of life sustaining treatments is

essential. It is to this problem that this study was directed.

Purase

A premature or critically ill infant has a major impact upon his parents.
Most research has described this situation as a crisis for parents in terms of the

immediate impact (Caplan, 1960; Caplan, Mason, Kaplan, 1965; Breslin, 1977).

This crisis is capable of eliciting a variety of somatic and emotional stress
responses as well as a range of coping mechanisms. The impact upon families is
not limited to the short term. If issues are not resolved completely, longer term
repercussions are quite possible. Manifestations of maladaptive reactions of
parents, such as child abuse and neglect and non-organic failure to thrive were
noted to be more common in children who required intensive medical care in
their newborn period than in the normal population (Ambuel and Harris, 1963;
Elmer and Greg, 1967; Shaheen, 1974). Based upon these research findings, it
becomes obvious that these families have special needs and require
understanding of the problems that they face. The purpose of this study,
therefore, was to identify the unique needs and concerns of parents who have a
newborn admitted to a NICU as well as to explore those interventions which

could be implemented to help parents to adjust this situation more effectively.

Significance

In the early days of neonatal intensive care, the medical dimension was
given priority, with little concern directed to the emotional repercussions of the
policies and procedures which were in effect at that time. Although today's
NICUs are much more sensitive to the psychosocial needs of their families than
were their predecessors, it is still necessary to maintain diligent monitoring of
the effects of the care provided. This should be done both in relation to the long
term physical and mental health impacts directly on the patient as well as the
indirect mental health impacts on the family.

Research studies, studies which will be discussed in greater detail in
chapter two, have shown the ill neonate to be at high risk following his/her
discharge from the NICU for such manifestations of parent-child dysfunctions as

child abuse and non-organic failure to thrive. The reasons for these phenomena

were, in the past, attributed to the effects of early separation of the mother and
infant. More recently, multiple factors are recognized as being influential in
this process. Whatever the cause, it is imperative that the factors which have
influenced this trend be better understood in order that the goal of safe and
conscienscious NICU care can be achieved.

While the incidence of child abuse in this population is increased, it must
be remember that not every parent who has an infant in the NICU is a potential
abuser. Indeed, most parents require only short term crisis oriented counseling
rather than long term protective services intervention. Staff members in the
NICUs need to be cognizant of normal stress and crisis responses as well as
coping mechanisms of parents in this situation to enable them to effectively
assist their families. Unhealthy coping during this time may delay successful
incorporation of the infant into the family system. In order to provide this
assistance to families, the staff must have a sound foundation of knowledge upon
which to base their care. It is hoped that this study will provide such knowledge

and, in addition, provide a basis upon which future research can be built.

Study Objectives

Early transactions are the basis for future relationships. It is essential that
health professionals who work with families with infants in the NICU develop an
understanding of how this situation alters the parent-infant transactional
processes. It is also important to understand how the altered transactions will
affect future family integrity and functioning. In response to this need, the
following heuristic objectives were developed for this study:
1. To review available literature regarding the psychological and emotional

effects on the parent who has a critically ill or premature infant in the

NICU.

5.

To review available literature regarding factors which affect long term
parental response to a critically ill or premature infant in the NICU.

To review available literature regarding factors such as those interventions
which may facilitate parental adjustment to having a critically ill or
premature infant in the NICU.

Based upon the completion of objectives 1, 2 and 3, a questionnaire will be
formulated to obtain parental responses to the NICU experience.

To formulate preliminary questions which can be used to develop

hypotheses and programs for future research and evaluation.

Major Study Questions

To facilitate the exploration of the impact of the critically ill neonate

upon the parents and the exploration of how health professionals might improve

the services provided to facilitate parental adjustment, the following general

questions were posed for neuristic delineation:

1.

What are the psychological and emotional repercussions on family members
of having a critically ill or premature infant in a NICU?

What are the factors which determine parental response to the admission
of their child to the NICU?

What are the possible interventions which might be implemented to
facilitate parental adjustment to having a critically ill or premature infant

in a NICU?

Operational Definitions

For the purpose of this study, the following were used as the operational

definitions:

Critically ill infant. This term was used to apply to any infant whose
condition warrants admission to a neonatal intensive care unit for treatment
other than for brief observation.

Neonatal intensive care unit (NICU). The NICU is a highly specialized
nursery, equipped and staffed to handle the unique needs of the critically ill and
premature infant. The NICU is also referred to as a high risk nursery, a level
three nursery, or a tertiary care center.

Begionalization. This is a system of perinatal care which was organized to
distribute services in a balanced and coordinated fashion. Maternal-child care is
provided in each designated region in three levels; level 1 being routine care and
level 3 being intensive care.

Gestational age. This term refers to the conceptual age of the infant. This
is determined prenatally with ultrasound, amniocentesis, or by date of the last
menstrual period. Postnatally, the Dubowitz or Ballard exams are used. A
classification system based on gestational age is used as follows:

Premature - Less than 36 weeks

Term - Between 36 and 42 weeks

Postmature - Greater than 42 weeks

Low birth weight. Low birth weight refers to an infant which is born with a
weight less than 2500 grams, regardless of maturity.

Family. For the purpose of this study, the family will be defined as "a
bonded unit of interacting and interdependent persons who have some common
goals and resources, and for part of their life cycle, at least, share living space"
(Andrews, Bubolz, Paolucci, 1980, p. 7).

Parents. For the purpose of this discussion, parent will refer to the infant's

biological mother and father.

Distanciig. An event or situation which serves to create emotional space
or distance between two individuals.

Support system. The network of resources, emotional or physical, that an
individual or family has available to them from their family, peer, or social
environments.

Environment. The physical, socio-economic, and psychological space which
encompasses a system.

Transaction. A reciprocal, two-way communication process which can

occur between individuals or systems.

Conceptual Framework

An ecosystems model of human development and functioning was used as
one part of the conceptual framework for this study. This model was used as it
has the benefit of being able to combine physical, economic, social and
psychological data, all within the same framework. It allows ready
conceptualization of the family system, its subsystems and its suprasystems.
Thus, it provides one with a comprehensive approach with which to view the
transactions between families and their environment.

Basic to the ecosystems approach is the concept of the family as a social
system. The family is a dynamic system, always acting and reacting to inputs
from within and without the system, in an attempt to maintain its internal
equilibrium. It operates on a feedback model, where inputs from the
environment are received by the system and are then evaluated, integrated, and
possibly, assimilated. Based upon its conclusions, the family system then makes
an appropriate response (output) into the environment. This feedback process
reflects the flexibility and adaptability of the family system. The feedback

process is essential to the maintenance of a family systems internal equilibrium.

The importance of maintaining equilibrium will be discussed further in the
discussion of crisis theory, which follows. In a sense, crisis can be defined as a
state of disequilibrium which results when normal efforts to maintain
homeostasis fail.

The family system has several characteristics which should be briefly
discussed. First, the family system has boundaries. These boundaries range on a
continuum from being very open to being very closed. This is often referred to
as the permeability of the boundaries. Boundaries assist in the maintenance of
the system's equilibrium by regulating the flow of resources in and out of the
system. In other words, they serve to maintain the family's integrity.

A family system is comprised of subsystems. The subsystems may be the
individual members or a combination thereof. Examples would be: the husband,
the husband-wife dyad, or the husband-wife-mother—in—law triad.

Another characteristic of the family system is that it is guided by rules.
This is true even of the most disorganized system which can be classified as a
family. The rules are the conscious or unconscious directives for the
organization of the system. The rules are reflected in communication patterns,
roles, behavior, and power structures. The rules are based upon the norms and
values of the system.

The final characteristic of the family system which is important to this
discussion is that of energy. Energy is critical to every system and is required
for its functioning. Energy here refers to food, fuel, money and information as
well as emotional energy. A family must have the means to provide itself with
energy in order to maintain independent functioning.

The system and its subsystems are two levels of the ecosystem. A third
must also be discussed. The suprasystem is the environment in which the family

system exists. It can be further broken down into other independent systems

such as the physical environment or the social and cultural environments. There
is, as mentioned earlier, a reciprocal interaction and transaction between the
system, the subsystems, and the suprasystem. Bronfenbrenner (1979) emphasizes
the importance of considering the transactions between the various levels of the
ecosystem when considering human development. He also feels that the human
organism and the environment equally contribute to the process of development.
Both must be given due consideration when considering the impact of any given
event upon the system.

The ecosystem theory is a comprehensive and holistic base utilized as a
part of the conceptual framework in this study. The second major component of
the framework used in this thesis is the crisis theory.

The word crisis is widely utilized in our society. It is used to describe
anything from a natural disaster to a set of lost keys. Crisis theorists, while
making the definition more objective and, hence, more measurable, have allowed
for this variability in their definition. Reuben Hill (1965) developed an equation
which summarizes his crisis framework. This is: A (the event) —-9 Interacting
with B (the family's crisis meeting resources) —-> Interacting with C (The
definition that the family gives to the event) = Produces x (the crisis). This is a
most useful tool for professionals who work with families in crisis.

The event which precipitates the crisis is usually a situation for which the
family was totally unprepared. It may be either situational or maturational. In
some cases, the actual event may not be as threatening as some of the
ramifications of the event. As Hill aptly put it, "the stressor event must be seen
as a variable rather than a constant in family crisis research" (Hill, 1965, p. 35).

The impact of the event is seen as being dependent on two variables: the
family's resources and the family's perception of the event. A family's crisis

meeting resources are the physical and emotional tools which are available to

help resolve the crisis. If these tools are deficient or inadequate to meet the
demands of the event, a crisis situation may ensue. Hill (1965) noted that
persons of a low socio-economic status may be more prone to a crisis as a result
of their limited resources. To these persons, losing little represents a very great
loss. There is no buffer zone as they are already operating at a minimal
subsistence level.

The impact of a crisis precipitating event is also dependent upon how the
event is perceived by the family. This perception, or the meaning of the event,
is determined by a variety of factors such as values, state of equilibrium and so
on. The meaning of the event represents the reality of the event to the family.

What are the characteristics of a crisis? These were described by
Rapaport (1965). A crisis is a temporary state. It is usually self-limiting. There
are predictable stages which occur in a crisis. Various theorists have different
names for these stages but they are all essentially the same. There is, first, the
family's pre—crisis state of equilibrium. This is followed by the event or the
precipitator. A period of disorganization develops at this time when previous
patterns of coping are tried but found unsuccessful. This disorganization is
reflected in the family's communication, coping styles, and interactions.
Behaviors such as denial, somatization, withdrawal, and other stress responses
are seen at this time. As the family readjusts to the changes that have occurred
in their lives, a period of reorganization ensues. This phase varies in the amount
of time it takes to reach it as well as in the degree of resolution which occurs.
This resolution may be to the pre—crisis level of organization or it may be to an
inferior or superior level. Ideally, a crisis is a call to growth and a higher level
of functioning should be achieved. Most crisis theorists do not consider a crisis

to be a negative event for this reason. Some of the developmental psychologists,

10

such as Erikson, use the idea of a crisis in terms of personality development
(Levy, 1978).

The concept of a developmental crisis is frequently used when discussing
normal life changes, such as marriage and childbirth. In fitting with the crisis
theorists perspective, these situations call on the individual to respond to these
maturational situations with increasingly complex coping mechanisms. As a
result, the family and the individual's capacity to respond to future crises are
increased and strengthened.

Reuben Hill's equation for crisis development stated two major factors
which help to determine the family's reaction and adjustment to the stressing
event: the resources for coping and the meaning attached to the event. There
are several other factors which may also influence the family's adjustment.
Family integrity, good intra-family relations, strong husband-wife relations,
democratic authority lines, and previous success with crisis resolution were all
factors cited by Hill as being associated with greater adjustment (1965). Going
back to systems theory, these factors can also be related to the functioning of
the system. Family integrity refers to the strength of the boundaries as well as
the bonds within the system. Strong attachments within the family, husband-
wife and parent-child, create a supportive environment which facilitates crisis
resolution. The family's rules for functioning can also be seen as important to
adjustment. If strong patterns exist prior to the crisis, they are more likely to
support the family through the difficult period.

Those persons who are working with families who are experiencing a crisis,
such as a premature birth, need to keep several points in mind. First, it is not
uncommon for a crisis to reawaken unresolved issues lying dormant in a family or
within an individual. In order for successful resolution of the current crisis to

take place, these past issues must be identified and recognized by all the

11

involved parties (Lindemann, 1944; Rapaport, 1965; Hill, 1965; Parad and Caplan,
1960). There also seems to be agreement that the function of the professional in
these situations is not to override the family's ability to help itself. Instead, the
professional‘s role is to support and guide the family through its own crisis work
(Lindemann, 1944; Hill, 1965). It may also be important to help the family to
recognize any unresolved conflicts which are hampering current recovery.
Availability and acceptance by the professional are two other tasks required of
this role. Lastly, it is necessary to help some families to identify support
systems which could bolster their resources both emotionally and physically.

Before concluding this discussion on the basics of crisis theory, it is
important to review several points on one specific type of crisis, that of
bereavement. The work of Erich Lindemann will be used as the basis for this
discussion (Lindemann, 1965). The majority of Lindemann's work was based on
observations and counseling done with bereaved patients. However, it was
discussed that the "Grief Syndrome" is also seen in persons who are experiencing
anticipatory grief. Lindemann describes a combination of psychological and
somatic symptoms which result from the loss or perceived loss of a loved one.
The symptoms vary in intensity and duration. Somatic symptoms such as
tightness of the chest and throat, frequent deep sighing, anorexia, a feeling of
emptiness, weakness, fatigue, and gastrointestinal symptoms were just a few of
the more common expressed by bereaved persons. Psychological manifestations
were described as feelings of "intense mental pain", altered sensorium,
preoccupation, feeling distant or unreal, and, in some cases, guilt due to
unresolved issues with the deceased.

It is important to include this discussion on grief and anticipatory grief
responses as these are frequently encountered in the NICU. Parents focus on the

helplessness and fraility of the infant and are unable to recognize the strengths

12

and, hence, potential viability of the neonate. Parents are also grieving for the
hoped-for, healthy infant (Kennell and Klaus, 1982). This combination of losses

of the family represents the crisis situation which will be the basis for the

remainder of this thesis.

CHAPTER II

HEURISTIC EXAMINATION OF THE LITERATURE

The Tasks of Pregnancy

Pregnancy is often considered a mixed blessing by even the most
enthusiastic parents-to-be. On one hand, there is great happiness and pride
related to the event. Sollie and Miller (1980) conducted a study in which they
attempted to explore the issues which surround the transition into parenthood for
first time parents (n=120). In this study, they found four major positive and four
major negative themes. The positive issues centered around the rewards and
satisfactions associated with parenthood. Emotional benefits (joy, warmth, love,
happiness), self-enrichment and development, a sense of family cohesiveness, and
identification with the child were found to be the greatest rewards during this
transition period.

On the other hand, the transition to parenthood was also draining to these
couples. They cited the physical demands of the new baby as a major cause for
this drain: the late night feedings, the lack of sleep, and the extra work
involved. The changes which were required in the husband-wife relationship
represented another major issue of this time. The third theme parents in this
study referred to was the emotional costs of new parenthood. Emotional costs
included such things as the increased responsibility and the worry that they

would be unable to meet this heavy responsibility for another's life. The final

13

14

issue raised by these parents centered around lost opportunities imposed by the
transition to parenthood. This was a reference to the loss of flexibility and to
the restrictions imposed on their social life by the baby. Economic issues were
also raised due to the limitations imposed on maternal work schedules and the
extra expense of the child.

As seen from these comments of first time parents, parenthood is an event
which demands changes in roles, relationships, time commitments, and in family
structure. It calls for each family member to assume greater responsibilities
within their system. Many first time parents worry about their ability to meet
these responsibilities adequately. The family system must adapt to
accommodate its newest member; its boundaries must be enlarged. The husband
and wife relationship must be altered. Family dynamics in general must be
changed as the infant becomes integrated into family boundaries and function.
In addition to assuming the new or expanded role of parent, previous roles must
be readjusted or given up completely. All of these tasks represent an often
overwhelming amount of readjustment which must be accomplished in a
relatively short period of time. It is for this reason that this period is often
referred to in terms of a developmental crisis (LeMaster, 1965; Dyer, 1965).

A developmental crisis differs from the acute crisis discussed earlier only
in that it occurs as a result of events which are common to almost everyone, i.e.,
starting school, leaving home, marriage, parenthood and retirement. These
situations possess all the characteristics of a situational crisis except for one.
They are usually not totally unexpected. They are, however, significant turning
points which call for new skills and coping patterns; the old will no longer
suffice. Equilibrium of the individual and/or family is disrupted. E.E. LeMaster
attempted to explore the issue of parenthood as crisis first in 1957. His study

(n=48) found that 83 percent of his sample perceived the event of their first child

15

to have been an extensive to severe crisis in their lives. This sample population
felt that they had been totally unprepared for the realities of parenthood due to
overly romanticized perceptions that they had initially carried into the event.
LeMasters felt that this unrealistic ideal could have been a partial variable for
determining the degree of crisis experienced by the new parents. This was
substantiated by the responses of parents who did not experience what they
perceived to be a crisis at this same time. These parents indicated that they did
have realistic conceptions of what to expect of parenthood. However, the
numbers in this subsample of LeMaster's study were too small to enable
significant conclusions to be drawn. Indeed, an overall drawback of this study
was the relatively small sample. The sample was also drawn from middle class,
urban couples where the husband, at least, possessed a college degree. Dyer was
able to replicate these findings in a similar study done in 1963. His sample
(n=32) was done on a similar type of population.

As both of these studies were done on a middle class population, the
generalization of these results is limited. While further research would be
required to substantiate their conclusions, it seems reasonable to presume that
the low income family would experience an even greater degree of crisis at this
time due to the further strain upon already limited physical, financial, and
emotional resources.

Erik Erikson also discusses the task of parenthood as a crisis in the
"Generativity versus Stagnation" stage of life (Levy, 1978). Optimally, this crisis
will result in growth and maturation of the parents as they work through the
tasks of this stage. According to Erikson, adults are trying to generate meaning
in their lives. This is accomplished through productivity in one's personal life,

family, interests, and career. The opposite end of the spectrum is stagnation. If

16

an individual does not succeed in this stage, he is defined by Erikson as non-
productive, non-directive, and without purpose.

In the above discussion, many of the similar concerns of both the mother
and the father were discussed. It is also important to discuss the concerns of
each individually in order to present a more complete picture of the state of the
family at the time of the infant's birth.

Issues that the mother is experiencing during the pregnancy are often
stressed more than those of the father. There are two probable reasons for this.
First, the pregnancy has traditionally been the mother's domain. Fathers were
never given their due in terms of their feelings or involvement in the pregnancy.
They were the outsiders. Second, the pregnancy is physically more a part of a
woman's lifespace. As a result, she must bear the brunt of many of the physical
changes as well as the ways that these impact upon her life. As a result, the
woman usually receives more attention than does the father. While this
attention is usually positive and supportive in nature, mothers can also
experience depression as a result. The physical manifestations of pregnancy,
such as weight gain, nausea and fatigue, may enhance this depression (Osofsky
and Osofsky, 1981).

Osofsky and Osofsky (1981) derived a list of major issues experienced by
each parent in the pregnancy process. The list was based on their extensive
clinical experience as well as on interviews with parents. One of these issues
was given much attention in this and in other sources as well (Brazelton, 1981;
Rubin, 1967 ; Kennell and Klaus, 1982). The issue was the reawakening of
unresolved issues related to the mother's childhood and her relationship with her
parents, especially her own mother. Other concerns which were cited by

mothers related to the apprehension regarding their own safety as well as that of

17

the baby, the changing relationship with their spouse, concerns about changes in
lifestyle and concerns about their capability to be a parent.

This work points out the fact that the nine months of pregnancy are
important for the growth and development of the maternal role as well as for the
development of the fetus. Reva Rubin (1967) discussed this complex problem of
how mothers obtain the role of mother. Based upon her research, Rubin isolated
five catagories of behavior which women seemed to experience as they strove to
adjust to their new identity as a mother. Rubin's stages were not found to be
mutually exclusive and often occurred simultaneously. Rubin did find, however,
that certain categories of behavior were more predominant at given times during
the pregnancy. Mimicry is the first such behavioral catagory and is seen more at
the early stages of the pregnancy. Mimicry is defined as a "taking on" behavior,
meaning that it is a more external type of action. The adoption of behaviors
which are perceived as "pregnant" is mimicry. These include the wearing of
maternity clothes, selective eating habits, and restrictive activities. The second
stage, role play, is somewhat less symbolic. It is essentially trying the role on
for size. Women who were at this point were noted to interact with children and
even pets more at this time, testing their success with the maternal role.
Fantasy, the next catagory of maternal role attainment behaviors, can occur
along with other behaviors but is more pronounced as the pregnancy progresses.
It is, in fact, internalized role playing. It allows exploration of the possibilities
and potentials of the role, free of the bonds of external realities. The child is
visualized at this time, both as the ideal child and as the "dreaded" child
(premature, deformed, etc.). The fourth stage is when actual "taking on" of the
role begins. This phase is called Introjection-Projection-Rejection (I-P-R). It is
the process of evaluating role models and referents in terms of maternal

behaviors and judgments, comparing these to one's own values system and making

18

decisions accordingly. This occurs both prenatally and postnatally. Examples
would be breast versus bottle feeding, working versus not working, spanking or
not spanking, and so on. The last phase is that of grief work, mourning for the
previous role and identity. While the maternal role is being assumed, another
must be discarded or adjusted. This was found to be a sporadic process,
beginning at the time the pregnancy was confirmed and, in some cases, even
earlier. Tentative resolution occurs usually about one month postpartum.

While the woman is adjusting to her new role as a mother, a similar process
is happening with the father as he attains the paternal role. This is a subject
which was largely ignored until recently.

Antle (197 2) describes four major emotional components to the paternal
pregnancy experience. The first of these related to the father's protective
feelings toward the spouse or partner. These are stimulated, in part, by feelings
of pride, wonder, and emotional closeness which can accompany the news of a
desired pregnancy. Another type of emotion that may arise is related to the
anxieties and concerns over the safety of the partner and the new baby. In
addition to these concerns about physical well-being, many fathers are also
worried about their ability to provide for the new baby. This is, in part, a
financial concern but also includes issues related to doubts about their ability to
be good fathers. Lastly, the father, as a result of all of the above, has increased
dependency needs. He needs extra support to help him cope with his extra
worries and concerns. This may come at a time, however, when his spouse is
"turning inward" and wrestling with her own concerns. Depending on the
strength of the relationship prior to this time, couples may either draw closer in
response to concerns or distancing may occur. These emotional issues
experienced by fathers were similar to those described in other studies (May,

1978; Oehler, 1981; Brazelton, 1981).

19

Osofsky and Osofsky (1981) also cited a few additional issues that men in
their study identified as problematic at this time. Changes in their sexual
relationship with their partners was a source of concern to many men. This
change may have occurred as a result of fatigue or discomfort in the women. It
also was reported to be a result of fears on the part of some of the fathers that
they might somehow harm either their partner or the fetus. These changes in
the sexual relationship may be occurring at a time when the father is feeling
exceptional emotional closeness to the spouse or partner. This situation may
result in distancing if ignored or not handled appropriately by the couple.

Also mentioned in the Osofsky and Osofsky study (1981) was an issue
briefly touched upon earlier. Fathers are the less obvious participants in the
pregnancy and parenthood experience. Consequently, they are likely to receive
less attention than mothers. As mentioned, this is a time when the father is
feeling especially isolated and vulnerable, requiring a little extra nurturance.
This sense of isolation is important to the famiy unit. Family boundaries are an
emotional as well as a physical entity. Due to a common feeling of ambivalence
experienced by almost all parents, this isolation may cause significant disruption

in the family system if it is not attended to appropriately.

Attachment

 

The previous discussion demonstrated that the pregnancy is a period when
many physiological and psychological tasks must be accomplished by the family
system. There is also one additional task which is occurring around this time
which warrents a separate discussion. This is the process of bonding and
attachment.

Criticism has surrounded some of the research on bonding and attachment

in recent years due to problems with their methodology and/or interpretations.

20

It must be said, however, that despite any faults that exist in these studies, they
have served an important role in society. Hospital policies related to the family
have been drastically altered in response to studies such as those done by Drs.
Kennell and Klaus (198 2). The birthing process and the postpartum period have
been put back into the family sphere. The medical profession now plays a more
supportive role. Fathers in the labor and delivery rooms, sibling visitation,
rooming-in and flexible visiting hours are the rule rather than the exception.

A review of current literature in this area can prove quite confusing. The
terminology is often unclear and poorly defined. The terms bonding and
attachment are often used interchangably. Also, many used small samplings and
were poorly controlled for confounding variables (Gay, 1981; Lamb, 198 2;
Mitchell and Mills, 1983). Operational definitions are another source of question
in many studies. For instance, is the length of breastfeeding or is the position of
the mother with the infant truly a manifestation of either attachment or
bonding?

Many have also questioned the results of these studies. Most would agree
that there are short term changes which occur as a result of extended contact
after birth (Chamberlain, 1982; Lamb, 1982; Siegel, 1982; Mitchell and Mills,
198 3; Anisfeld and Lipper, 1983). The long term results are less conclusive. Few
studies have followed the maternal infant dyad beyond the first twelve months.
Those that have had relatively small sample sizes, limiting the generalizability
of the results. For instance, Kennell and Klaus followed their 1972 study of
mothers and infants through the first five years. The children were seen at two
years and again at five years. Through attrition, their sample decreased from
fourteen in each of the experimental and control groups to nine in the
experimental and ten in the control. From this sample it would be difficult to

attempt to make any major statements concerning long term results of the

21

study. On the other hand, one would not realistically expect to see any type of
effect remain over such a long period of time without the benefit of some form
of follow through programming. The stronger effects of the more immediate
environmental and social variables would be expected to wash out any changes
which did occur from these programs.

Bonding is a term popularized by Drs. Kennell and Klaus back around 1972
when the earliest major work on the subject was released. They defined bonding
as "a unique relationship between two people that is specific and enduring over
time" (1982, p.1). They used the behaviors of kissing, cuddling, fondling, and
prolonged gazing as operational indicators of bonding. Kennell and Klaus state
that "by general consensus a bond is a tie from parent to infant, whereas the
word attachment refers to the tie in the opposite direction, from infant to
parent" (1982, p.2). Gay, on the other hand, defines bonding as "a gradual
continuing reciprocal process that incorporates the processes of acquaintance
and attachment and links two individuals in a coordinated, constructive social
relationship" (Gay, 1981, p.442). This definition differs not only in the timing of
bonding, but also differs in that bonding is referred to as being reciprocal.
Bronfennbrenner (197 9) also suggests this idea of reciprocity in the early parent-
child interaction. He suggests the possibility that the results of bonding studies
are not a result of contact per se, but of the reciprocal transactions of mother
and infant. Such semantic confusion regarding the term bonding brings difficulty
to the interpretation of bonding studies.

The concept of a critical period is important to discussions of bonding as it
is defined by Kennell and Klaus. The idea of critical or sensitive periods were
derived from animal studies. In some species it is essential for mother and
infant to be together for a critical period after birth or the mother will reject

her offspring. Mitchell and Mills (1983) define a critical period as any time when

22

a living organism is more sensitive to environmental stimuli than at any other
time. This refers to both positive and negative stimuli. Colombo (1982)
recommended three criteria which should be used when attempting to define a
critical period. They are: ability to distinguish precise onset and termination,
ability to determine specific stimulus, and ability to determine the system being
affected. According to these criteria, it is questionable if human bonding could
qualify as a critical period as the timing is not proven. The existence of a
critical period in either parent—infant or maternal-infant relationships is an issue
much debated. This period has never been satisfactorily isolated in humans. The
implications of this will be discussed later.

Attachment is the final construct that will be defined. Ainsworth (1979)
defines attachment as "an affectual tie that one person forms to another specific
person, binding them together in space and enduring over time" (Ainsworth, 1979,
p.1). According to this definition, attachment is a reciprocal process. The
purpose of attachment is to secure the proximity of the attached persons.
Attachment endures separation over time and distance. Ainsworth states that
there is a sensitive period for attachment; that qualitative and quantitative
interactions must occur between an infant and its primary caretaker between
one month of age and twenty-four months if attachment is to be formed (1979).

As a result of some of the inconsistencies presented above, many began to
question the realities of the concepts of bonding and attachment. Some even
advocated the total rejection of the theories. This is a bit extreme, however,
and a more moderate stance is required. For the sake of clarity in the remainder
of this review, the term bonding will not be used. Instead, attachment will be
viewed as a continuum, beginning prenatally and continuing through the early

years of the parent—child relationship. Support for this position will be provided.

23

Recent work on infants has altered previous misconceptions regarding
infant capabilities. Most notable of these studies have been works of T. Berry
Brazelton (1973) and Thomas, Chess and Birch (1977; 1979). The works of these
researchers have had a tremendous impact in the area of attachment research.
Brazelton, for instance, devised an assessment scale which clearly documents the
infant's ability to respond and react to interpersonal and environmental stimuli.
The infant is capable of eliciting and maintaining the proximity of the caregiver.
He can be very selective in terms of what he attends to and what will be
screened out (Brazelton, 197 3). Based on these documented abilities, it would
seem difficult to view either bonding or attachment as simple one way
interaction.

This is also the implication of the research of Chess and Thomas (1977) and
Thomas, Chess, and Birch (1979). They have isolated distinct patterns of
temperament present very early after birth. These temperaments were distinct
from the parenting patterns of the caregivers. In their study, these researchers
found 40 percent of the children studied could be classified as "easy", 15 percent
were "slow to warm", and 10 percent were classified as "difficult". Each
catagory of temperament represented quite different patterns of behaviors and
reaction patterns on the part of the infant. These behaviors elicited varied
responses from the parents.

The studies demonstrate two points. As discussed earlier, the infant is not
passive in the early acquaintance processes. The infant's behavior makes an
important contribution and should not be discounted. The fact that the infant
has a temperament that is discernible very early in life makes the possibility of
a one way operation in any segment of the attachment process altogether less
feasible. In other words, an infant cannot be considered a passive tabula rasa at

birth. It can, and does, participate in transactions with its environment.

24

It is also important to realize that the human brain is both flexible and
adaptable. It is not locked into specific, genetically determined behavior as
would be seen in some of the lower orders of animals. In addition, especially
from the ages from birth to about six years, the brain possesses a characteristic
called plasticity. Plasticity refers to the ability of the developing brain to
compensate for and make adjustments to early insults to its integrity.
Therefore, a human infant who is separated from its mother during the
immediate postpartum period is not likely to suffer irreversible consequences as
a result. A lack in one area can be compensated for in another (Brierly, 1979).

The earlier discussion on the tasks of pregnancy pointed out that there are
many reorganization and adjustment processes which are occurring at the time
of birth. There has been research done which has identified that the attachment
process may be an additional task which occurs at this time. Some researchers
have begun to reevaluate the heavy importance attributed to the immediate
postpartum period in terms of long term attachment. They argue that the
parents have been forming attachments to their infants long before the birth has
occurred. This has been occurring since the pregnancy was confirmed. This is
not to discount the importance of the immediate postpartum period. This is
when the family is united for the first time and is most certainly a very
emotional and deeply personal experience. However, this experience cannot be
taken out of the context of its place along a continuum. It is not a point in and
of itself but a point in a far more complex process. Using this viewpoint of
attachment as a continuum makes it far easier to reconcile that families who are
separated after birth can form equally strong attachments (Osofsky and Osofsky,
1981; Oehler, 1981; Liefer, Leiderman, Barnett and Williams, 1982; Sameroff,
1982).

25

Cranley (1981) performed two separate investigations to determine if
parents do indeed form attachments prenatally. The position held in these
studies was that the relationship could potentially begin as early as when the
parents begin to desire and plan for a child. More commonly, a mother begins to
form an attachment when she begins to feel a kinesthetic, intellectual, and
physical awareness of the fetus. In her first study, Cranley interviewed thirty
women during their last trimester and then again on their third day postpartum.
These women were of mixed socioeconomic status and education levels. Fifteen
of these women were experiencing their second child, eight were having their
first baby and the remainder were having their third or greater. The results
showed that 78 percent of these women engaged in behaviors or attitudes
reflecting attachment to the fetus during the pregnancy. This prenatal
attachment was found to be independent of antecedent and demographic
variables. While there was also no association found between self-esteem or
anxiety, the researcher did state that no inferences could be drawn from this as
the women demonstrated an unusual homogeneity of high self-esteem scores. An
interesting finding was that social support was positively correlated (r=0.51,
p50.002) with maternal-fetal attachment. Stress was negatively related to
attachment (r=-0.41, p£0.01). While the sample of this study was small, the
results bear consideration and warrant further study.

Cranley (1981) also studied prenatal attachment among fathers. In this
study, a larger sample was used (n=100). Ninety of these expectant fathers were
experiencing their first child, eight were experiencing their second, and for two,
it was their third or later child. This study involved a questionnaire with two
parts. The first was an adaptation of the Maternal-Fetal Attachment Scale,
while the second part involved the Wapner's Marital Relationship Scale. The

results indicated that fathers also demonstrated attachment behaviors

26

prenatally. A positive correlation existed between the fathers' perceptions of
the strength of the marital relationship and paternal-fetal attachment (r=0.5,
p-‘-0.01). The author cautions about making wide inferences from these data, as
the majority of the fathers in this sample scored well above the mean on the
Marital Relationship Scale.

While requiring further study and documentation, these findings do indeed
seem logical. If attachment was not occurring during pregnancy, why would
parents experience such strong grief responses with miscarriages and stillborn
infants? One frequently hears pregnant women referring to their unborn using
nicknames. They also often describe the en utero antics of their fetus
(hiccoughing, kicking, turning) as intentional or playful. Consider, also, the extra
care which many pregnant women exercise during this time. These are all
manifestations of nurturant caretaking activities which reflect caring and
concern for the fetus. The implications of this area are fascinating. Future
research needs to explore this area further and evaluate the potential for
interventions and programming. It may be that our attempts to decrease child
abuse and neglect need to be started at this time in order to be more effective.

There is very little in human development which is dependent solely on one
variable. The culture, society, peer and family systems as well as each
individual's psychological and physiological make-up all interact and intertwine
in the attachment process (Snyder, 1979; Sameroff, 1982). There are many
antecedent variables which are present at the time of the infant's birth which
will affect the parent's initial response to the infant.

This was a point recognized by Siegel, one of the researchers of the well
respected Greensborough study (Siegel, 1982). This study involved 312 low
income pregnant women who were randomly assigned to one of four groups.

These groups were: early plus extended contact plus a home visit, early and

27

extended contact only, only a home visit, and a control group. Observations of
attachment behaviors were observed at four and twelve months (Siegel, et al.
198 0). Multiple regression was used to assess the contribution of certain
antecedent variables such as marital status, education, parity, age, and the score
of the Peabody Picture Vocabulary test. Their results showed that these
antecedent variables had a greater impact on attachment than did any of the
interventions. For example, at the four month evaluation, 22 percent of the
variance for acceptance measures was accounted for by background variables (9
0.0001) while early and and extended contact accounted for only 2.4 percent of
the variance in scores (pé0.04), (Siegel, et a1. 1980). The researchers attributed
this to the fact that "the social, economic, and other stresses associated with the
background variables are burdens, often intergenerational in nature that are not
easily altered" (Seigel, Bauman, Schaefer, Sanders, and Ingram, 1980, p. 187).

A study by Anisfeld and Lipper (1983) adds an interesting twist to the early
contact models for attachment. This study involved 59 women. Of these 59, 29
were given one hour of extra contact after the birth of their child. After that
hour, they received no further extended contact. The control group received
routine hospital care, which consisted of being briefly shown the infant and then
separated until the time of the first feeding. Observations by a trained
individual were made at two days postpartum during a feeding. The observer was
blind to the status of the mother in the study. In agreement with other studies,
there was a significant difference (at the p 5 0.05 level) in
affectionate/attachment behaviors between the two groups. Moreover, of the
extra contact mothers, those who were classified as having low social support at
the time of the delivery were found to have higher attachment scores. Social
support was evaluated on the basic four criteria: marital status, whether or not

a recipient of public assistance, whether or not a high school graduate, and

28

whether or not the father was in the delivery room. These criteria are somewhat
similar to the background variables discussed earlier in the Siegel et al. (1980)
study. Anisfeld and Lipper felt that the results of this study helped to define
when early contact would be most effective. For instance, their data showed
that women who had low social support at the time of their child's birth and
received no extra contact had the lowest mean affectionate-contact scores
(Mean score=23.0i6.9). Women who had low social support but who received the
extra contact had the highest mean scores (Mean score=34110.1). This
interaction between social support and attachment was noted to be significant at
the 0.03 level. Mothers who had social support at this time were not affected
significantly by the extra contact (Mean score of mothers with high support and
extra contact=30.2i9.7; Mean score of mothers with high support and routine
care=29.417.3). Anisfeld and Lipper felt that this data indicated that women
with low social support may benefit most from the effectiveness of early
contact. This was also a finding seen in the Cranley study (1981) discussed
earlier. The question might be raised as to whether it is indeed the extra
contact which is promoting attachment in these studies or, as these studies
indicate, if it is the level of support that a woman has available to her at this
time.

This study has significance to the NICU staff as the characteristics used to
define social support are similar to characteristics which define perinatal risk.
Low socio—economic status, low education levels, non-white racial background
are all related to a higher incidence of stillbirth, prematurity, toxemia, low birth
weight, and other high risk situations. In addition, teenage mothers and mothers
with high parity are more prone to perinatal difficulties (Osofsky and Kendell,
1973). Consequently, the NICU staff may see more mothers with minimal

support systems as a result of the shared implications of these characteristics.

29

This would further add to an already complicated attachment process that NICU
parents must deal with.

Based on the above discussion, the following will be used for future
references to attachment. Parent-infant attachment will be viewed as a
continuum which begins prenatally and continues to develop throughout the early
years of the child's life. A variety of factors are believed to affect this
development: the culture, the society, factors related to the pregnancy and
delivery process, the parent's past and so on. The period immediately following
birth will be viewed as important to the famiy, but not as essential in terms of
attachment. A variety of other factors may compensate for its absence.

The Environment

The birth of a premature or critically ill newborn is, for most parents, the
realization of many of their unspoken prenatal fears. It precipitates a wide
variety of emotions and reactions. While the parents are most immediately
concerned with their newborn's welfare, it is important to recognize that the
NICU environment is impacting upon the family and is affecting their responses.

Intensive care units have been criticized since their inception in the 19603.
This criticism stems from all the negative stimuli to which the patients, their
families, and the ICU staff are exposed. While these units are providing the
intense technology that many persons require to sustain their lives, much is lost
in the process. An individual loses his/her identity, is separated from his/her
loved ones, is deprived of sleep, and is exposed to a wide variety of noxious
stimuli. It is not surprising that patients in the intensive care units do lose
contact with reality, unrelated to their clinical diagnosis, and develop a
syndrome called "ICU Psychosis" (Gowen, 197 9).

Neonatal intensive care units differ from adult ICUs in many ways, but

they also experience many similar problems related to the negative

30

environmental stimuli. The most widely identified environmental problem of
theNICU has been that of noise pollution. NICUs, as a rule, require a greater
number of personnel than do most other hospital units to be considered safely
staffed. This, combined with the noise emanating from the equipment and
alarms, produces a disturbing clamor. This has been a source of much concern as
research into environmental hazards has shown noise pollution to be detrimental
to both physiological and psychological well being. Noise levels in both adult and
neonatal intensive care units have been documented to reach unhealthy levels
which can cause both temporary and permanent manifestations of hearing loss,
hypertension, sleep disorders, and other stress related responses (Falk and Woods,
1973; Woods and Falk, 1974; Miller and the American Academy of Pediatrics
Committee on Environmental Hazards, 1974; Price, 1976; Long, Lucey, and
Phillip, 1980). The noise affects patients, staff, and visitors, all to varying
degrees. In a study by Falk and Woods (1974), these stress responses to the noise
levels in adult ICUs were examined. They noted such physiological responses to
noise as the activation of the pituitary/adrenal axis, vasoconstriction with
elevated blood pressure and tachycardia, and an increased secretion of a variety
of hormones. While these responses are normal and essential adaption reactions
which help the body cope with stress, persistence of the stressor can eventually
lead to decompensation of the body as a whole (Falk and Woods, 1973; Selye,
1976). Psychological responses to sensory overstimulation, such as anxiety,
depression and irritability, can accentuate the physiologic responses. The
environment of the NICU is likely to have negative impacts upon the parents
much as it affects patients and staff. There has been little, if any, research
done to document the existence of these effects on the parents. However,

research that would assist in the identification of any contributions made by the

31

environment to the parents' comfort and anxiety may prove to be an important
step toward change in this area.

Several researchers have investigated noise levels in the NICU. In the
Falk and Woods (1 97 3) study, noise levels were measured at various high risk
areas of the hospital, including inside of isolettes in their NICU. The mean noise
level inside of the isolettes in this study was 74.5 dB using a linear scale and 57.7
dB on an A-scale. For comparison, a normal conversation would be 50 dB(A), a
noisy office, 70 dB(A), and a noisy factory, 80 dB(A), (Woods and Falk, 1974).
Chapman, Bess, and Peck (1980) found the mean overall noise level in isolettes in
their study to be 77.4 dB. Striking the side of the isolette produced peak ranges
of 130-140 dB. Merely closing the door to the storage area below most isolettes
created a peak amplitude of 114 dB. Anagnostakis, Petmezakis, Messaritakis,
and Matsaniotis (1980) and Bess, Chapman, and Peek (1979) used similar formats
in studying noise levels inside NICU isolettes. They measured the added noise of
various types of equipment used in the NICU. The mean ambient noise levels
inside the isolettes was 55.0-11.0 dB(A) and 55.4dB(A) respectively. Use of a
respirator increased the mean values to 6511.7 dB(A) and 60.0dB(A) respectively.
In the Anagnostakis study, it was also found that infants inside oxygen hoods with
humidity and a flow of 5 liters per minute were exposed to 7511.5 dB(A). Crying
could add another 10dB(A). Both of these research groups recognize several
facts: 1) adult safety levels cannot be generalized to infants; 2) adult safety
levels are based upon only eight hours of exposure and infants can be exposed for
periods of days to months and; 3) many of these infants are being given ototoxic
drugs which can potentiate the effects of noise levels. Both of these research
groups also concluded that the possibility for hearing damage and physiologic

disruption are very real.

32

There is a paucity of research which has actually measured the physiologic
response to noise in the premature or ill infant. Long, Lucey, and Philips (1980)
conducted one such study in this area. While the sample was quite small (n=2),
the results were alarming and do indicate the need for further research. The
infants in their study were monitored for intracranial pressure, oxygenation
levels and other general vital signs concomitant with measurements for ambient
noise levels. A fall in oxygenation, a rise in the intracranial pressure, and
increases in heart and respiratory rates were noted when loud sudden noises were
perceived by the infants. This reflects that physiological responses do occur.
This study lends support to the belief that sudden, loud noises can be a potential
precipitator of intracranial hemorrhage a major cause of morbidity and mortality
in the premature infant.

There are countless machines and monitors used in the neonatal intensive
care units. While their use is vital to the care of the infants, there is usually
some risk to their use. These invasive types of equipment carry the inevitable
worry of iatrogenic complications, either trauma, infection, or both. These risks
must be weighed against the benefits of the equipment's use.

In addition, there are always the psychological risks. Equipment on and
around the infant can be a barrier to parent-infant interaction. It can obstruct a
parent from completely visualizing the infant, as in the bases of bili-masks,
oxyhoods, heat shields, and the securing tapes for the endotracheal or
nasogastric tubes. It can inhibit a parent from touching or holding an infant as in
the cases of IV's. On a very small infant, ekg leads, amboards or dressings can
cover a significant portion of their body, limiting the areas where a parent can
touch or stroke the infant. Extra equipment may also reflect the need of the
infant for extra support, and consequently may be seen by the parent as a

greater degree of illness and threat of death.

33

The use of equipment in the NICU is not decided indiscriminately. It is
often a physiological necessity. In the premature or critically ill neonate,
handling must be kept to a minimum. It has been documented that these infants
cannot adapt physiologically to handling (Long, Philip, Lucey, 1980). The use of
moniters, infusion pumps, and other types of equipment allows for the minimal
handling of these infants. This could prove life-saving as recent research has
documented that even some normal care-taking activities, such as diaper
changing, cause hypoxia in an unstable infant (Speidel, 1978; Long et al., 1980).
While the infant's health and future well being are, of course, the first priority in
this situation, it does indeed represent a further limitation of parent-child

interaction.

The NICU Staff

The NICU staff is an important component of the environment which
surrounds the infants and their families. How the staff responds to the needs of
these families will play an important role in how the family will adjust to this
situation. The staff, however, is also much affected by the NICU environment.
As a result, burnout is a serious problem in these units.

Burnout is defined as "a loss of motivation for creative involvement" by
Marshall and Kasman (1980, p. 1161). This is both a physical and psychological
problem for the staff. Physical problems include fatigue, a decreased sense of
well being, and increased absenteeism related to psychosomatic complaints.
Emotional problems include hostility and negativism, feelings of helplessness and
isolation, and depression. These are reflected in a wide range of behaviors at the
work place.

Causes of burnout in the neonatal intensive care unit have been studied
extensively. While there are many reasons for this problem, several themes were

recurrent throughout these studies. Emotional reasons were cited as one of the

34

major causes for burnout in nearly every study (Marshall and Kasman, 1980;
Astbury and Yu, 1982; Gribbons and Marshall, 1982; Frader, 1979;
Jacobson,1978). The death of an infant was also cited in each of these studies as
being highly stressful. The death of an infant is a seeming paradox and is often
difficult to accept. Death also has the added implication to some medical
personnel of reflecting failure on their part (Marshall and Kasman, 1980).
Ethical issues were also a source of high anxiety for the NICU staff members,
for they must repeatedly question their efforts in light of the patient's quality of
life. This is especially true when "chronic" or long term patients are involved
(Astbury and Yu, 1982; Gribbons and Marshall, 1982; Marshall and Kasman, 1980;
Jacobson, 1 978; Frader, 1 979).

Nurse-physician relations were also high on the nurses' lists as a source of
chronic stress (Jacobson, 1978; Gribbons and Marshall, 1982; Astbury and Yu,
198 2; Schmidt, 1977). This was usually as a result of a lack of role clarification.
Neonatal nurses are highly specialized. This, combined with their experience,
places them in a rather unique position. They have a greater responsibility for
their patients than do some nurses in other units. Problems arise when either
one or two situations occur. Physicians may ignore the nurses' competence and
knowledge or, in reverse, may shift their own responsibility onto the backs of the
nurses (Schmidt, 1977; Gribbons and Marshall, 198 2; Jacobson, 1978).

Understaffing and overwork are common complaints of NICU nurses and
physicians. Due to burnout and a high staff turnover, it is often difficult to
maintain enough nurses to safely staff the units. Orientation to these units is, of
necessity, extensive. This decreases the rate at which departing nurses can be
replaced. As a result, overtime and heavy patient assignments are the rule
rather than the exception. This is a very stressful situation for these nurses and

given the unstable nature of the patient population, frustration rises with the

35

knowledge that safe, comprehensive care is not being maintained (Jacobson,
1978; Astbury and Yu, 1982; Gribbons and Marshall, 1982; Walker, 1982; Schmidt,
1977; Jones, 1982).

The type of care provided in the NICU is family centered, meaning that the
care extends to the parents as well. This can become a stressor in itself if
parents are responding to the situation with anger, denial, or hostility. Also,
many parents who have infants in the NICU were high risk to begin with, often
with problematic or variant life styles. It can be stressful to deal with such
families day after day (Marshall and Kasman, 1982; Marshall and Kasman, 1980).

Jones (1978) also studied the stress responses of the nursing staff in the
course of a total environmental analysis of two neonatal intensive care units.
Using a standardized psychological evaluation (Warheit—Schwab Survey) and
open-ended interviews, Jones found that NICU nurses exhibited significantly
higher levels of depression, psychosomatic symptoms, anxiety and mood disorders
as compared with the general population (significant at the 0.05 level). It is not
known, however, if these difficulties were present prior to the time that these
nurses began working in the NICU or if these were incurred as a result of the
nature of the job. Jones also noted that the nurses experienced very intense
emotions related to changes in their patients condition. She identified much
ambivalence on the part of the nurses regarding their jobs. Many of the factors
cited by the nurses as leading to job satisfaction were also the same as those
reported as creating dissatisfaction. An example of this would be the
unpredictable nature of the job. This unpredictability is seen as both stimulating
and stressful by the nurses.

While the discussion thus far has mainly dealt with nursing issues, it must
be recognized that the neonatologists also experience burnout. While many of

the stresses are the same, physicians do have their own unique set of problems.

36

One author summed up the neonatologist's problem when he said, "The relentless
load of responsibility which cannot be shared, the anxieties of making life and
death decisions almost every day and the concern over long term handicaps in
the survivors eventually over the years take their toll." (Walker, 1982, p.86).Signs
of this toll are reflected by avoidance, inflexibility, resistance to change, and in
the more severe instances, abandoning the field (Schmidt, 197 7).

The staff's tension is bound to be perceived by the neonates and the parents
as well as be transmitted to them. In addition, the staff's stress levels may
reach a point where it begins to interfere with their ability to help others. Also,
the continuous exposure to this perpetual stress of the NICU environment may
desensitize the staff and, hence, they may be unable to anticipate or recognize
reactions of the parents. Most NICUs are committed to family centered care.
In order to meet this commitment, the staff must "heal itself" and develop some
mechanism which will help to control the effects of stress and burnout. It is

essential that the care of these infants and their families is not compromised.

Parental Reactions

The antenatal period has been described as a time when parents are
psychologically developing and readjusting their lives to accommodate their new
roles as parents. Even those who have experienced this with earlier pregnancies
must undergo this process again (Osofsky and Osofsky, 1981). Birth of a
premature infant interrupts this natural development. The crisis of premature
birth delays resolution of the tasks of pregnancy until resolution of the crisis of
the early birth has been resolved. In addition, the special needs of the premature
or critically ill newborn may aggravate parental concerns over parenting
capability. Financial concerns are also accentuated. Above all, of course, is the

concern for the infant's well being.

37

After giving birth to an ill neonate, parents describe a wide gamut of
emotions including grief, guilt, and anxiety. These reactions have been described
in literature dating as far back as the turn of the century (Silverman, 1979).More
"recently", there have been the works of Prugh (1953), Caplan, (1960), and
Kaplan, Mason, and Caplan (1965). While these works are widely quoted in
current discussions of parental reactions, it must be remembered that the NICUs
discussed in these studies were vastly different from the NICU of today. The
most important difference is that parental visitation was not an accepted
practice at that time. Visits were limited to viewing the infant from the
windows of the nursery until it was time to prepare for the discharge.

The works of Caplan, Mason, and Kaplan (1960, 1965) on premature birth
and the family were all a part of a larger study on the effects of stress on the
family. Caplan (1960), for instance, looked at thirty families in depth to
determine if a healthy versus unhealthy resolution of the crisis could be
predicted based upon certain clusters of behaviors. In this exploratory study, it
was found that a certain degree of accuracy in prediction was possible. It was
found that cognitive grasp of the situation, how feelings were handled, and the
provisions for help in resolving the crisis were most helpful in predicting
resolution. Parents who had successful crisis resolution tried to maintain a
cognitive grasp of the situation, maintained a conscious awareness of unpleasant
emotions and actively sought help from family, friends, and the professional
staff of the unit. Unhealthy resolution was reflected by denial and avoidance of
information which might force acknowledgment of the severity of the situation.
Emotions were surpressed and, as a result, aggressive outbursts, non-specific
tension and meaningless activity in non-related areas was commonly manifested.
An inability to ask for help was commonplace and dysfunctional communication

patterns between the parents were noted.

38

Kaplan and Mason (1960) discussed maternal reactions to the premature
birth. They emphasized the initial shock that most women feel. These
researchers proposed four psychological tasks which they felt were necessary for
mothers of premature infants to work through in order to successfully master the
crisis. The first was anticipatory grief. This involved acknowledgment of the
severity of the infant's condition as well as the potential for the baby's death.
The second is accepting "her failure" to deliver a normal, full term infant.
Symptoms of depression and grief are considered normal at this time as the
mother works through these emotions. The third task is begun as the resolution
of the first two steps near completion. The mother must now resume the task of
accepting the infant and develop a relationship with her baby. At this time, the
mother begins to make preparations to assimilate the infant into the family
system. Lastly, she must learn the special needs of her premature infant and
alter her expectations accordingly.

While for the most part these tasks, identified in the 19603, are the same
today as they were at that time, a few cautions must be discussed. Society's
values and attitudes have changed in the past twenty years. Men today are
considered a much more integral part of the birthing and parenting process.
Consequently, the application of these tasks should be broadened to include the
father as well. Another problem seen with Kaplan and Mason's work is related to
this same issue of sex role orientation. Their second task referred to the
"woman's failure" to deliver a normal infant. This seems to reflect a certain
type of value system, which is not as widely accepted as it once was. Guilt and
failure are frequently cited emotions experienced by both parents in this
situation (Prugh, 1953; Benfield, Lieb, Reuter, 1976; Duhamel, 197 7; Otto, 1980).
The causes for these emotions varied widely and will be discussed in greater

detail later. Perhaps, a broader description of this task, which would account for

39

this variability, would be more appropriate. Phrasing the task as "acceptance of
the premature birth" would allow for more variance in the parental response.

Prugh (1953) made several astute observations concerning parental
problems associated with premature birth. The mother, for instance, is forced to
delay the assumption of her maternal role and instead must assume a supporting
role. She may feel inadequate, in that she is unable to provide the same quality
of care to her infant as is being provided by the nursing staff. Resentment of
the staff, especially the nurses, may ensue. Prugh suggests that the nurse may
even be viewed as a mother figure. This may further increase the resentment,
depending on the mother's prior relationship with her own mother. It might be
that such feelings of jealousy, resentment, and competition with the nursing
staff was more problematic in the 19503, when parents were rigidly excluded
from the nurseries. However, this problem still exists to some degree today as it
is cited in several more recent sources (Colen, 1981; Cohen, 1982; Newman,
1980; Hernig, 198 3; David, 198 3).

Prugh also cited guilt as a common emotional response of both parents,
who may fear that the premature birth could have somehow have been
prevented. Little is actually known about the causes of most premature births.
However, guilt continues to be a problem with many parents as they attempt to
rationalize the birth (David, 1983; Duhamel, 1977; Benfield, Leib and Reuter,
1976; Otto, 1980). Due to the greater physiological involvement between the
mother and the fetus, Benfield et al. (197 6) found a higher incidence of reported
guilt feelings in mothers than in fathers.

Benfield, Leib, and Reuter (1976) investigated the grief responses of
parents whose infants had been transferred to a regional neonatal intensive care
unit. They studied 101 parent dyads and their responses to this crisis. Mothers

consistently reported greater grief feelings than did the fathers. Responses,

40

listed in decreasing order of frequency,experienced by these parents, were
sadness, sleep difficulties, preoccupation, loss of appetite, irritability, guilt and
anger. The researchers also used a cluster of variables to measure the presence
of anticipatory grief in these parents. This was found in the majority of the
parents. Anticipatory grief was found to be positively correlated to the degree
of pleasure that was reported by the parent over being pregnant (r=0.02, p50.05).
Anticipatory grief was also reported by Newman (1980), Kaplan and Mason
(1960), and Green (1964).

Anxiety, of course, is always prevalent. This was a frequently cited
problem for parents in responding to their ill or premature infant (Newman,
1980; Duhamel, Lin, Skelton, and Hantke, 1977; Otto, 1980; Prugh, 1953; David,
1983; Colen, 1981; Benfield et a1. 1976; Caplan, 1960; Caplan et a1. 1965). This
is understandable given the precarious status of the infant's health. Prugh points
out that any anxieties which existed during the pregnancy will aggravate
anxieties resultant from the baby's problems. Several studies found that there
was no association between the severity of the infant's health status and the
parent's level of anxiety (Harper et a1. 1976; Benfield et a1. 1976). Duhamel,
Lin, Skelton, and Hantke, (1977) raised the question as to whether this anxiety
could have a negative influence on the parent's perceptions of the infant,
ultimately disrupting the parent-child relationship. While the existence of
anxiety in this situation may appear to be common sense, its effects should not
be underestimated.

Newman (1980) found that parents have essentially two styles of coping:
coping through commitment and coping through distance (n=10). Parents who
coped through commitment became actively involved in the care of their child.
They spent a great deal of time visiting the unit. They tried to become

knowledgeable about the problems their child was experiencing as well as about

41

the child's care. They also reduced their expectations of the infant. On the
other hand, some parents seemed to need emotional distance from the situation.
These parents were described by Newman as requiring "a slower acquaintance,
relying on expert care, and expressing fear, anxiety, perhaps denial before
acceptance of a surviving infant" (p. 189). This group avoided visiting the unit
frequently. As one mother expressed it, "We will get to know her when she
comes home. Right now, it is too painful." These parents seemed unable to cope
with the realities imposed by unit visitations. Newman made no attempt to
judge these coping patterns. It was recognized that individual coping patterns
must be respected and that parents who "hold back" in response to anticipatory
grief should not be pressured into meeting the expectations of the staff. A
parent who is attempting to deal with his/her grief may be emotionally
unavailable at this time. Allowing parents to determine their own readiness and
to pace their involvement accordingly was a conclusion reached by many of the
researchers (Otto, 1980; Newman, 1979; Sherman, 1980; Breslin, 1977, Duhamel
et al. 1977).

Altered Transactions

The association between hospitalized infants and parenting disorders was
noted as far back as the turn of the century by Pierre Budin (Silverman, 1979).
Budin, considered by some to be the father of neonatology, stressed the need to
encourage parental involvement with these infants. His warnings were largely
ignored, and parents were prohibited from interacting with their ill or premature
infants until the time of their discharge. This meant that for periods which
ranged from days to months, parents and infants were prevented from normal
transactions now considered so essential.

Around the mid 1960s, two factors came into play which helped to reverse

this trend. The first was the national recognition of the problem of child abuse

42

and neglect. Research studies were implemented in order to determine
thecauses of this tragedy. It was during the course of these studies that the
association between hospitalization at birth and abuse was first noted. The
second factor was the growth of interest in child development. The importance
of these early years had gone largely ignored prior to this time. Initially, the
focus was on the toddler and preschooler. As the fields of child development and
child psychology further developed, the importance of infancy was eventually
recognized. It was this trend, as represented by the works of Kennell and Klaus,
which helped to facilitate more flexible and open visiting policies in the
nurseries and in the labor and delivery rooms.

Early literature indicated that premature and critically ill infants were
disproportionately represented in the statistics on child abuse and neglect.
Studies of children with failure to thrive syndrome were also reported to have a
high incidence of prematures in their studies. These findings of dysfunctional
parenting patterns were attributed to the prolonged separation of these parent-
child groups. A closer look at some of these studies raises questions about their
validity, as well as about some of their conclusions (Minde, 1981). One pervasive
problem in almost all of these studies was that the perpetrator of the abuse was
never identified. In order to make an accurate statement about a relationship
between poor attachment and abuse, one must clearly be able to isolate a parent
as the abuser. This information was not provided in most of these studies.

The Klein and Stern (1971) study used retrospective chart review over a
nine year period to determine the proportion of low birth weight infants with a
diagnosis of battered child syndrome. They found that out of 51 children
meeting their criteria for abuse, 12 were found to have been low birth weight.
This represented 23.5 percent of their sample. Of these, nine had significant

neonatal problems, including "mental retardation" and microcephaly. Ten of

43

these children also came from homes described by a social worker as "deprived",
with alcoholism, unemployment, poverty, and social disorganization. Also
significant to this discussion are the characteristics of the other 39 abused
children in this study. Of the 39, 15 (38 percent) had preexisting medical
problems such as mental retardation, cystic fibrosis, hypospadias, and cleft lip
and palate. The home situations of these children were not discussed. Clearly,
there are many confounding variables involved in this study. It seems feasible
that a more realistic conclusion of this study would have been to focus on the
interaction of the disturbed environments and the special demands imposed by
the medical problems of these children.

Another study which is frequently cited relating prematures with child
abuse and neglect was done by Elmer and Gregg (1967). This study looked at the
charts of 50 children with "unexplained bone injuries". Of these, only 22 could be
classified as abused with any certainty. This classification was based on
psychological and physical evaluations. "Almost all" of these 22 children were of
low socioeconomic status. Housing was defined as substandard. Marital
disharmony, isolation, alchoholism, parents with criminal records (including one
murderer), and severe psychological problems were reported to be common, but
no specific details were provided. A reliance on physical punishment, even for
infants, was also reported. Seven of the 22 infants had been "premature".
However, this determination was inappropriately made on the basis of the child's
weight and not upon a gestational evaluation. This is an important distinction, as
these infants could have been small for gestation age (SGA). SGA infants have
been reported to have a higher than normal incidence of neurodevelopmental
difficulties and early problems with social interaction (Avery, 1981; A13, Lester,
Brazelton, 1979). In Elmer and Greggs' study, 12 of the 22 had IQs less than 80.

As with most studies dealing with child abuse, it was impossible to determine if

44

the retardation was the cause or a result of the abuse. Due to the vagueness of
the reported data and the existence of so many confounding variables, it appears
inappropriate to make any conclusions about a direct relationship between child
abuse and prematurity.

Another condition sometimes attributed to a parenting dysfunction, failure
to thrive, has also been associated with prematurity. Failure to thrive is a
complicated problem with many causes. It is defined as a disproportionate lag in
growth in the child. Medically related causes can include dysfunction in almost
every organ system: cardiac, central nervous system, gasrointestinal,
respiratory, and so on. It also has emotional origins, and in these cases is
sometimes traced to parenting disorders. Failure to thrive can be classified in
two ways: organic, meaning that a physical cause has been found, and non-
organic, meaning that either no physical cause could be found or that an
emotional cause was found. Minde (1981) has criticized the methodology of
many of the major studies which have tried to link prematurity to failure to
thrive. Many of these studies (Ambuel and Harris, 1963; Shaheen, 1968) failed to
use the commonly accepted definition of failure to thrive, instead using their
own definitions. They also did not differentiate between premature and small
for gestational age. As a result, their studies were based on populations which
could have been below the third percentile of weight to begin with.

Hunter, Kilstrom, Kraybill, and Loda (1978) conducted a prospective study
on 255 infants to evaluate the incidence of child abuse and neglect occurring in
the graduates from their NICU. Family evaluations were done prior to the
infant's discharge, and determinations for risk of abuse were made at that time.
Forty-eight infants were initiauy identified as being at high risk for abuse. Of
these 48, seven were placed in foster care homes before the infants' were

discharged. There were no custody changes which occurred in the low risk group.

45

A 3.9 percent (n=10) incidence of abuse was found out of the total population of
255. Of these, all had been predicted to have been at high risk for abuse based
upon their family history and characteristics. These characteristics included
social isolation, a family history of abuse, marital problems, personality
disorders, and inadequate child spacing. The abused children differed from other
neonates in that they were less mature at birth (mean gestation 31.5 weeks
versus 35.26 weeks), weighted less at birth (1.477 Kg. versus 2.224 Kg.), were
less frequently visited in the unit by the parents, and required longer periods of
hospitalization. Congenital defects were present in six out of the ten infants
who had been abused, confounding the relationship to prematurity.

This discussion has not been an attempt to negate or deny the higher
incidence of child abuse and neglect in NICU graduates. Rather, it has
endeavored to put the problem in a more realistic perspective. Based on these
studies, as well as those which will follow, it would appear that abuse and
neglect arise from situations in which there are problematic transactions

between parents and children in a nonsupportive environment.

Parent-Infant Transactions

The transactional model is of great importance to the discussion of the
premature or critically ill infant as it serves to integrate many of the principles
thus far discussed. The problem of child abuse in this population cannot simply
be attributed to separation from the parent; there are too many other
confounding variables involved. The transactional system approach relates all
these variables into a more meaningful, holistic explanation of the problem in
question. For instance, the studies presented earlier discuss the high incidence
of abuse present in children with preexisting medical problems. These problems
occurred in both normal and premature infants. These infants place added stress

and demands on their parents in terms of time, emotions, money, and energy.

46

They may also have disturbances in their ability to communicate with their
caretakers. This could be a result of either CNS dysfunction, prematurity, or
various other types of problems.

The parent, on the other hand, could also contribute to the dysfunctional
interaction. Recall that some of the abusive parents in the studies presented
earlier were alchoholic, had marital difficulties, and had moderate to severe
psychological problems. These parents may have been unable to function within
the realms of normal communication patterns, much less face the demands of
their children. While not all abusive parents follow such a disorganized pattern
of functioning as was seen in these studies, it is possible that the ability to
communicate, interact and/or be emotionally available to the child is impaired in
most abusive adults.

The environment is another essential component to the transactions which
are occurring. It may either contribute to or enhance the likelihood of an
abusive situation occurring. The ecosystem's framework emphasizes that no
individual operates within a vacuum. The family system dynamics, together with
the social, economic, and cultural environment of which the family is a part, are
all impacting to effect change in the family. Any model of human behavior
which does not account for these variables is far too simplistic. In the remainder
of this discussion, validation for these statements will be provided.

T. Berry Brazelton's work in the field of child development has shown the
newborn to be a highly efficient and competent organizer of his environment.
He is able to communicate with his caregivers and make his needs known; he is
also capable of maintaining the proximity of the caregiver or shutting the
caregiver out when this is appropriate. The infant uses his states of
consciousness for this purpose. The Brazelton Neonatal Assessment Scale

demonstrates the newborn's capacity to habituate to repeated, disturbing stimuli,

47

and control his state in order to attend to what is significant (Brazelton, 1981).
Brazelton feels that these capabilities allow the infant to participate in
significant interaction with the parent or the environment. The infant provides
rewards to the parents through his/her attention, responsiveness, "babyishness",
and cuddliness (Emde, 1981). Later, the social smile and cooing add to the
infant's ability to reward the parents for their caregiving behaviors and
encourage their continuing proximity. In the ideal transaction, the neonate can
organize his state and his responses in order to communicate his needs to the
parents. The parents' response, in turn, helps the neonate to expand and further
differentiate its capabilities (A13 and Brazelton, 1981).

Current studies are attempting to define how prematurity influences the
infant's ability to react and respond to its environment. A13 and Brazelton (1981)
and A13, Lester and Brazelton (1975) proposed a hierarchy for behavioral system
organization based upon feedback and interaction between the infant and his
environment. They found three parameters useful in assessing the infant's nature
of functioning and competence. They were: level of organization, degree of
differentiation, and the degree of modulation. The level of organization refers
to the degree of integration of which the infant is capable. There are five levels
of system organization through which the infant progresses: the physiological
system, the motor organizational system, the state organizational system, the
interactive and attentional system, and the self-regulation system. The degree
of differentiation is the level of sophistication of the infant's behavior.
Modulation reflects the ability to implement and sustain a behavior smoothly and
easily.

Preterm infants demonstrate a heightened sensitivity to environmental
stimuli, responding with physiological decompensation. They require sensitive

environmental structuring to facilitate social interaction. This is due to the fact

48

that their level of organization is within the physiologic system and is not well
established (A13 and Brazelton, 1981). Divitto and Goldberg (1981) describe this
phenomena as "the younger and more physiologically vulnerable the baby, the
more the demands of survival consume energy which might otherwise be invested
in interactions with the environment" (p. 312). This was also noted in other
studies (Gorski, Davidson, Brazelton, 1981; Frodi, 1981).

The altered ability of the premature or critically ill infant to engage in
social transactions with the parent has serious implications for the development
of the parent-infant relationship. During much of the infant's stay in the NICU,
the infant may remain organized at the physiological stage, where social
interactions remain fairly limited. As the infant moves through the motor
system and becomes more adept at state control, initial attempts are made at
"socialization". At this time, the premature infant has a greater tolerance for
stimuli and needs to invest less energy in physiological maintenance. This
knowledge should not only be incorporated in the NICU staff's care of these
infants, but should be taught to the parents as well. This will assist them in
developing realistic expectations of the infant's behavior.

Goldberg (1979) reported that evaluation of preterms' behavior at the time
of their discharges had several significant differences from the behavior of a
term infant. (Statistics not provided.) These prematures spent relatively little
time in an alert state, had difficulty maintaining alertness, and were less
responsive to their caregivers. They also cried less. Goldberg suggested that, as
a rule, premature infants were less likely to give their caregivers clear-cut
messages about their needs. They are also less competent in social interactions.
Goldberg stated that the normal infant "helps adults" by being readable,
predictable, and responsive. The preterm infant, on the other hand, cannot help

as a result of poor organization. Parents may end up with feelings of

49

helplessness and frustration. This was in agreement with the findings of A13 and
colleagues (1 97 5), Brazelton (1973), and Divitto and Goldberg (1981).

The research of Gorski, Davidson, and Brazelton (1981) has shown that the
premature infant must first develop internal stability before social development
and organization can occur. Overstimulation can drain the infant's limited
resources and cause the infant to further withdraw in order to protect himself.
The high levels of negative stimuli to which infants are continually exposed
during their stay may be as much a factor in their low levels of social skills as is
their immature neorodevelopmental status. Gorski and his colleagues as well as
Goldson (1981) both advocated the use of environmental manipulation to improve
the recovery rate of infants, based upon this principle.

Frodi and Lamb (1978) added a fascinating twist to the altered
communication patterns of the premature infant. They showed videotapes of
both normal and preterm infants to a group of 64 parents. The infants were
shown both in a quiesent state and a crying state. In half the tapes the
soundtracks were switched, so that the preterm infants' had the term infants cry
and vice versa. They then gathered physiological data and self-reports from the
parents who viewed the tapes. Their data showed that the cry of the premature
infant was perceived as the most adversive, and elicited the greatest degree of
autonomic arousal. These findings were the most prominent when the preterm
infant and the cry were paired. This data suggests that the cry, a major source
of communication in the infant, may be perceived as antagonistic by the parent.
Rather than accomplishing its purpose of eliciting the proximity of the parent,
the parent may instead try to avoid the child. This may eventually decrease the
sympathetic responses of the parent and a negative cycle may ensue. It was
proposed that the persistence of a negative stimuli, such as a cry, may

eventually be the catalyst for an abusive situation. While this research focused

50

on the altered cry of the premature infant, there are other neonatal conditions
which have abnormal, characteristic cries. Application of Lamb and Frodis'
model to these children may prove equally informative.

These studies indicate that the premature infant does indeed have an
altered response level to the environment. This altered response level may send
faulty cues to the parents, such as "leave me alone". Parents will reap few
rewards from such interactions unless they are aware of both the
neurodevelopmental significance of the behavior and its temporary nature.

While research is beginning to accumulate which substantiates the
transactional model as an explanation for dysfunctional parenting patterns
(Frodi, 1981), there is little to validate previous suppositions that early parent-
infant separation was the major cause in this population. Leifer, Leiderman,
Barnett, and Williams (1972) and Crawford (1982) found that any differences
which did exist in attachment patterns at the time of discharge from the NICU
were not observable by the end of the first year. Rode, Chang, Fisch, and Sroufe
(1981) investigated the hypothesis that relationships between parents and infants
who had required intensive care as a newborn would demonstrate aberrations as a
result of the separation. They were unable to determine a higher incidence of
strained attachments in this population. Their data suggests instead that
"attachment behaviors are influenced by caregiver-infant interactions over a
period of time, and provide evidence for resiliency in the formation of
attachment relationships" (p. 190).

Thus far, this review has shown that parents experience deep, emotional
responses to the admission of their infant to a neonatal intensive care unit. In
addition, many of the normal, reciprocal transactions cannot occur. This is a
result of the environmental restrictions, the medical and social limitations of the

infant, and the grieving responses of the parents. In order to deal with some of

51

these problems, NICU staff have tried several types of interventions. This will

be discussed in the following section.

Interventions

 

The first major intervention made by the NICUs was to attempt to upgrade
their care and emotional support of the families of the premature or critically ill
newborn. This was initially accomplished by liberalizing their visiting policies.
The closed door policy was originally instituted to guard the infants from
infection. It was found, however, that parents who were allowed to visit with
their infants were far more conscientious about scrubbing than was the staff.
Soon after, the barriers began to fall (Avery, 1981).

Harper (1976) studied the parental responses to these unlimited visiting
policies. While parental anxiety levels remained high and virtually unchanged by
the policy, most parents maintained frequent visits. When questioned in
retrospect, only 1 percent said that they would have visited less. Rosenfield
(1980) analyzed visiting patterns of mothers (n=78). She found that, initially,
visiting frequency was low. They were found to gradually increase after the first
week. Inclusion of the parents in an infant stimulation program seemed to
increase visits even more, presumably because the mothers felt that there was
something constructive they could do during the visits. It also may have been
that as the infants' conditions improved, their ability to transact served to
encourage the mothers to visit more. Minde, Trehub, Corter and their colleagues
(1978) found a similar trend in visiting patterns in their study of 18 infants and
their parents.

Parent support groups have been a popular and successful source of
intervention in the NICUs. Shosenberg (1980) and Minde, Shosenberg, Marton and

their colleagues (198 0) described their support group which used the idea of

52

"veteran" or experienced mothers as a part of the support team. The veteran
parent is one who has weathered the NICU experience and who can share his/her
insights with new NICU parents. A nurse coordinator was also at these meetings
to act as a liaison. A comparison between parents who participated in the
support groups (n=28) and those who did not (n=29) yielded some differences.
Mothers who were a part of the support groups tended to visit more (4.5 times
per week, SD=2.5 for those in the group versus 3.1 times per week, SD=1.9;
p,0.05). It may be that parents who would not participate were similar to those
described by Caplan (1960), who were unable to accept help and, therefore, at a
greater risk for a poor crisis resolution. It may also be that some persons, such
as those described by Newman (198 0) as coping through distance, would require a
different, more individual approach. A similar study, controlling for personality
characteristics, Caplan's predictors of crisis, and Newman's coping styles, may
help to determine if there are certain persons who would derive greater benefit
from this type of intervention. This would serve NICU staff in determining the
intervention most suited to an individual family's needs.

Other support groups were reported in the literature as well. They differed
in the degree of professional involvement. Some groups were made up entirely
of parents (Mangurten, Slade and Fitzsimmins, 1979), while others had
neonatologists, nurses and social workers (Erdman, 1977; Dammers and Harpin,
1982; Duhamel et a1. 1977). They also varied in their purpose. Some parents
used these groups as opportunities to share thoughts and feelings, deriving
comfort from the knowledge that they were not alone. Other groups were a mix
of information sharing, problem solving, and emotional support. In essence, all
of the models were an attempt to provide an additional form of support to the

parents.

53

These groups are not meant to substitute for or to delegate away the job of
caring for the emotional needs of the parents by the NICU staff. It is thought
that the greater emotional support that is provided during a crisis period, the
less strain there will be upon the parent-infant relationship (Sherman, 1981;
Breslin, 197 7; Caplan, 1960). Because of this philosophy, most NICU staff
realize that the social, physical, psychological, and emotional impact of their
units must be kept to a minimum. Difficulties arise when, in a crisis, staff must
concentrate their efforts upon the care of the infant. Often, this situation ties
up most of the staff and leaves no one to attend to the care of the worried
parents. This same type of situation can occur when units operate without
sufficient staff.

To bridge the gaps at these times, units have tried various methods to fill
in the void. Primary care nursing is one such approach. This is a system of care
where one or two nurses on each shift will be routinely assigned certain infants.
This system of care provides more consistent and thorough care of both infant
and parent. The families become familiar with "their" particular nurse and do
not need to reestablish a new relationship with someone different each time they
visit. In turn, the nurse is aware of the needs of the parents, as well as their
individual coping patterns (Sugar, 1978). This idea of having a consistent person
to communicate with parents was emphasized in several sources (Green, 1979;
Sherman, 1980; Klaus and Kennell, 1982).

Neonatal nurse specialists or clinicians, social workers, and child
psychiatrists have also been made available on a twenty-four hour basis in some
units. Their purpose is, again, to meet the parents' needs when staff pressures
preclude staff involvement. Use of such professionally trained personnel

eliminates the possibility that time conflicts could prevent meeting parental

54

needs. Such a person can give the parents the personal attention that is so
needed during this critical time (Sherman, 1982; Schmidt, 1977; Steward, 198 2).
Regionalization of perinatal care has greatly improved morbidity and
mortality figures by making specialized care more available. It does this by
organized planning and even distribution of expensive and scarce resources.
While the concept of regionalization has accomplished its goal of improving care
provided to mothers and infants, it has exacerbated the problem of the
separation of the family, sometimes by hundreds of miles. While the expense of
providing high risk perinatal care precludes expansion of these services, there
are ways to help offset some of the negative impacts of the transport situation.
Whenever possible, high risk mothers should be transported to the perinatal
center prior to delivery. This minimizes complications of both mother and
infant. It is a well known fact that morbidity and mortality figures for outborn
infants are significantly worse than those for inborn infants (Avery, 1981). A
transport in this manner also ensures that the mother and infant will be in the
same hospital. Sometimes it is not always possible to predict situations which
will require transport. In addition, the mother's condition may contraindicate
being moved at that time. In these cases, transport of the mother should follow
that of her infant, whenever her condition warrents (Kennell and Klaus, 198 2).
As the infant's condition stabilizes, he should be returned to the referring

hospital in order to be closer to home (Kennell and Klaus, 198 2).

Extended Family Concerns
There has been little discussion thus far about the other members of the
child's family aside from the parents. This is due mainly to a paucity of research
done in this area. Grandparents are occasionally allowed visitation in some units

if space and the physicians allow. The major concern in a NICU is that as the

55

number of visitors increase, so will the risk of infection. Initial studies have not
substantiated this fear, however. Umphenour (1980) studied the effect of sibling
visitation in an obstetrical unit. There were 215 control infants and 182
experimental infants in this study. Bacterial colonization prior to the sibling
visitation program was 70 percent. The colonization with the experimental
infants was 67 percent. The conclusions of this study was that sibling visitation
did not pose a risk in a normal newborn nursery.

While sibling visitations have become a more accepted practice in some
obstetrical and term nurseries, it is less common in the NICU. Schwab, Tolbert,
Bagnato, and Maisels (1983) evaluated the effects of a sibling visitation program
in their NICU. They measured behavior patterns through interviews with the
children and their parents, as well as by direct observation. The children were a
mean age of 5.2. The results were promising. There were no negative behavior
changes in the children, either before or after their visits. They did not exhibit
fear of the unit, whereas this was seen in the control population. The increased
fear was attributed to the controls having greater fantasies about what was
happening as a result of being excluded. The routine of the unit was not at all
disrupted by the visits and there was no increased incidence of infection noted
during their trial period. The sample size of this study was small (n=16), so
results must be interpreted with caution. However, this approach seems to have
merit as a way which the NICU staff may enhance family cohesiveness and to
also increase their support to the family system.

While this study was one of the few which actually documented the effects
of sibling visitation, it was advocated in several sources (Breslin, 1977 ; Goldson,
1981). Small children normally experience a certain amount of trauma with the
birth of a new baby in the family. This may become accentuated with the birth

of an ill newborn, as it entails the parents spending an even greater amount of

56

time away from the home. In addition, the grief responses that the parents are
experiencing may cause them to be less emotionally available to the siblings at
home. If the situation is not explained to them sufficiently, they may fantasize

about what is occurring (Goldson, 1981).

The Discharge

 

After parents have weathered the initial crisis of having a critically ill
newborn, they are faced with what some parents perceive as yet another crisis,
the discharge (Lund and LeFrak, 1982). Even when parents have participated in
their infant's care throughout the course of the hospitalization, the discharge
leaves the parents without the support of the monitors and staff. In order to
alleviate these difficulties, several strategies have been suggested.

Discharge teaching is not new to nursing. It has been a vital part of
newborn and intensive care nursery care for as long as these units have existed.
To supplement its effectiveness, several changes have been suggested.
Discharge education should ideally begin at the time of admission. Promotion of
the parents' comfort with the care and handling of the infant is integral to
relieving some of the anxiety surrounding the discharge (Cagen and Meier, 197 9).
Creating a supportive environment where parents feel comfortable enough to ask
questions and to practice the various skills required of them by their infants, is
an important role of the nurse. Involving the parents early on in the infant's care
eliminates the need for a "crash course" just before discharge. A crash course
leaves everyone, including the nurse, feeling rushed and anxious. Changes or
elimination of important information regarding a medication or some other
element of care increase in this type of situation. Use of the primary care nurse
is also beneficial at this time. It provides continuity in the teaching. In
addition, the pre-existing relationship may help the parents to feel more relaxed,

which will, in turn, enhance their learning (Bresodola, 197 7; Sugar, 1978).

57

The use of "rooming-in", common to most term nurseries, has become
increasingly popular in recent years. It provides the parents with a "transition
period", allowing them the opportunity to provide complete care for the infant,
while at the same time providing backup for questions, problems, or reassurance.
Varner, Ossenkop, and Lyon (198 0) found this to be useful with their parents.
They also mentioned the unexpected benefits found in the infants. They noted
one infant whose apneic episodes decreased when removed from the critical care
environment. Breastfeeding in this infant also progressed gradually over a period
of a few days. This coincided with similar reports by Gorski et al., (1981).

A more formalized extension of the rooming-in concept was in a report by
Goldson (1981) of the Family Care Center developed at Children's Hospital in
Denver. This is an eight bed step down unit available to parents who wish to
take advantage of it. The goal is to remove the infant from the physiological
stresses of the intensive care unit environment to allow him to develop his level
of organization to the highest possible degree. It has the added benefits provided
by rooming-in for the parents and allow sibling visitation.

Thus, these various authors have shown that a greater degree of
humaneness and creativity are possible in the intensive care setting. The NICUs
have come a long way since their rigis, antiseptic days of less than 10 years ago.
It is hoped that the trend will continue to evolve towards complete involvement

of the family in this setting.

CHAPTER III

THE QUESTIONNAIRE

Purpose

The purpose of the questionnaire was twofold. First, it was intended to
provide preliminary validation for conclusions which were modeled from the
literature review. Also, the questionnaire was presented to elicit parents'
personal comments and suggestions. This was accomplished through a

combination of open-ended, scaled response, and short essay questions.

Sampling

The questionnaires were mailed to the sixteen active members of a local
neonatal intensive care unit support group. Of these sixteen, eleven fathers and
mothers responded. All of the parents involved in this study had had an infant in
the NICU within the past five years. There were parents of both inborn and
transported infants in this sampling. No other characteristics of the infants
were known.

Due to the small numbers belonging to this group, it was decided not to ask
descriptive or demographic data from the parents. To do so could have betrayed
their confidentiality. In future studies with larger samplings, such information
would enable determinations to be made concerning the special needs of specific

subpopulations.

58

59

Procedure

Based upon a thorough review of the literature, the questionnaire was
created. Topics covered in the questionnaire included initial parental reactions,
their coping mechanisms, their responses to the NICU environment and staff, and
their evaluations of the interventions provided to meet their emotional needs.
(See Appendix B).

The questionnaire was mailed to the parents with two cover letters. One
was an introductory letter from the group's president, the other was a cover
letter for the study from this student. In these letters, the purpose of the
questionnaire and its anticipated benefits were explained. Parents were told
that their participation in the study was voluntary. They were also assured that
their answers would be kept confidential and that they would remain anonymous.

In order to assure their confidentiality, parents were specifically asked not
to include their names or addresses anywhere on the form. In addition, the
questionnaires were addressed and mailed by a person unaffiliated with either
this student or the study. Lastly, as mentioned earlier, demographic information

was purposely not requested.

M

To determine the initial responses experienced, parents were asked to
choose from a list of eighteen emotions. The emotions found on this list were
based upon those commonly reported in the review of the literature (Benfield et
a1. 1976; Sherman, 1982; Otto, 1980; Prugh, 1953; Caplan, 1960; Caplan et a1.
1965; Duhamel et a1. 1977). The parents were asked to choose the response
which they felt most closely represented how they felt at that time. An
additional space entitled "Other" provided parents with the opportunity to write

in emotions not mentioned.

60

The most commonly reported reaction to this situation was "Guilt", chosen
by seven parents. This was followed by "Love" and "Cheated", each having been
chosen by six parents. (See Table 1.) The rest of the responses were chosen by
less than half of the parents in this sampling. "Resentment", "Hopelessness", and
"Grief" were not selected at all. It is interesting to note, however, that while
the "Grief" response was not chosen, many of the responses that were are
symptomatic of grief (Benfield et al. 197 6; Linderman, 1965). Two parents also
voluntarily wrote in "Numbness" as a response.

Such variation in the responses is to be expected. The usefulness of this
type of data is not to be able to determine what responses are normal or
common. Rather, it is important for health professionals who work with these
families to be aware of the wide range of responses which are possible in this
situation. It was interesting to note that while "Guilt" was the most commonly
chosen response, "Failure" was chosen by only three parents. This would seem to
indicate that the guilt experienced by this group of parents is not a result of the
failure to produce a healthy, term infant as was suggested by Caplan, Mason, and
Kaplan (1965). Rather, parents may have been concerned that they had done
something to cause the infant's problems. Further investigation into this area is
necessary, as this could be an area where the unit's staff could provide
immediate and effective intervention. By clarifying for parents that little is
actually known about the causes of prematurity and other neonatal problems, it
is possible that in some of the cases the guilt feelings of the parents could be
lessened or alleviated. It might also serve as an opening into a discussion
concerning these feelings that the parents might have.

The second question was also related to parental reactions, but were

somatic responses as opposed to emotional. Every parent but one reported that

61

Table 1. Parental Response Frequencies to Question 1.

Please circle those responses which you feel most closely represent how you felt
at the time your child was admitted to the NICU.

Guilt 7
Love 6
Cheated 6
Empty 4
Depression 4
Fear of Unknown 4
Anxiety 3
Concern 3
Failure 3
"Left Out" 3
Anger 2
Fear of Loss 2
Apprehension 2
Hope 2
Low Self Esteem l
Resentment 0
Hopelessness 0
Grief 0
Numb 2

62

he/she cried easily. (See Table 2.) Fatigue, inability to sleep, and altered
relationships with friends and family were also frequently cited. Aside from
these four somatic responses, there was much variability seen. This, again,
reflects individual coping patterns.

Parents were asked how they contended with this crisis situation in their
lives on a behavioral level as well. Their responses could be grouped into three
types of patterns. Many turned to religion for support and guidance. As one
mother described this, "We relied on our Faith in God the most and I knew our
little guy would be alright." Others turned to the support of friends and relatives
for their help and emotional support. Several of the parents expressed the
feeling that the experience had strengthened their marital relationship. Lastly,
parents stated that they tried to cope with involvement. Visiting frequently,
coming to the unit for all the feedings, and performing caretaking activities
when possible, were actions that helped some of these parents to cope. This was
also reflected later in question ten. These responses will be discussed shortly.

Parents were also asked several questions regarding their perceptions of
the impact of the NICU environment upon their anxiety levels. For the most
part, variability in responses was again the rule. There were, however, certain
environmental factors which had a definite affect on the parents in this study.
(See Tables 3, 4 and 5.) The other babies in the unit, the alarms, and the tubes
and equipment on their own infant all had high mean response values (4.3, 4.2,
and 4.5, respectively). These three factors seemed to impact upon the families
at a more personal level than did the others. For instance, the alarms, tubes,
and equipment attached to their infants were continual reminders of the
precarious health status of their infant. The condition of the other infants in the
unit may have served to reinforce their own vulnerability as they watched these

children regress and suffer setbacks in their conditions.

63

Table 2. Parental Response Frequencies to Question 2.

At this time, did you experience any of the following?

Y_E§

a. Loss of appetite 3
b. Increased appetite 2
c. Inability to sleep 8
d. Increaded irritability 7
e. Cried easily 10
f. Mood swings 7
g. Physical Complaints (Headaches, Stomach

Complaints, etc.) 5
h. Fatigue 9
i. Alterations in relationships with family

and friends 8

j. Other responses given:
"My wife and I grew closer"

"Nervous"

N=11

64

Table 3. Explanation of Scales Used.

There were several questions which asked for a response based on a
continuum. A five point scale was used. Parents were requested to circle the

appropriate number, from 1 to 5, which best described their response.

I. DIDN'T AFFECT ME
DIDN'T CAUSE CONCERN

NOT AT ALL HELPFUL

2. RARELY AFFECTED ME
RARELY CAUSED CONCERN

RARELY WAS HELPFUL

3. NEUTRAL

4. OFTEN AFFECTED ME
OFTEN CAUSED CONCERN

OFTEN WAS HELPFUL

5. VERY MUCH AFFECTED ME
CAUSED MUCH CONCERN

WAS VERY HELPFUL

65

Table 4. Mean Parental Responses to Question 4.*

The NICU environment can be a stressful place in itself. Do you feel that any of
the factors listed below affected your anxiety levels? Please circle the
appropriate response.

MEAN PARENTAL
RESPONSE RANGE

a. SIGHTS
i. The equipment in the unit 3.2 (1-5)
ii. The other babies in the unit 4.3 (3-5)
iii. The activity in the unit 2.7 (1-5)
b. SOUNDS
i. General noise levels in the unit 2.3 (1-5)
ii. The alarms 4.2 (2-5)
iii. Conversations of the staff 2.1 (1-4)
iv. The radios in the rooms 2.0 (1-3)
v. Babies crying 2.5 (2-5)

0. SPATIAL CHARACTERISTICS

i. Crowded conditions 3.0 (1-5)
ii. Lack of privacy 3.5 (1-5)
iii. Number of persons in the rooms 2.5 (1-4)

(1. OTHER COMMENTS

"Being in the unit was reassuring and lessened anxiety by
experiencing the love, concern, and professional competency of the
entire staff." "Drawn curtains-always a sign of trouble." "Banging
the isollete doors, (which) made the baby jump was irritating."

*See page 64 for an explanation of the scales used.

66

Table 5. Mean Parental Responses to Question 6.*

What about your baby's appearance caused you the most concern initially?

MEAN PARENTAL
RESPONSES RANGE

 

a. The baby's size 2.5 (1-5)
b. The tubes and equipment on the baby 4.5 (4-5)
c. The baby's activity level 3.0 (1-5)
(1. Other

"That terrible grey color"
"Bruises from the needles"
"The baby's color"

N:

*See page 64 for an explanation of the scales used.

67

Other environmental stimuli did not appear to disturb the parents much at
all. One parent even commented that such things as the staff's conversations,
radios, and crying babies were reassuring to her, creating a sense of normalcy.
One mother was able to describe the unit's wallpaper and rocking chairs. It
seemed that many of the parents had a heightened sensitivity to certain
characteristics of the environment while not noticing others which may have
been cited as noxious and disruptive in the literature (Miller et al. 1974;
Kellman, 1982; Woods and Falk, 1974; Gowen, 1979).

The parents were also asked to evaluate the staff's ability to provide
emotional support. The parents in this survey rated the nurses quite highly
(mean response 4.9). (See Table 6.) The effectiveness of the nursing staff in
their ability to provide emotional support and reassurance to these parents was
also reflected in parental responses to question five. This question asked parents
to describe if there was anything about the NICU that the parents found
reassuring or comforting. Every parent cited the staff, more specifically the
nurses, in response to this question. The "genuine love and concern for their
little patients", "their professional attitude" and "willingness to empathize with
our pain" were reasons given for this response.

All the parents in this study reported having consistent nurses caring for
their infants. This was found to have been very helpful. One father even felt
that his son appreciated this. Knowing the nurses that were caring for their
infants was described as reassuring. Many felt that primary nursing facilitated
"a closer, more honest relationship". Others stated that it helped them to feel
more comfortable in expressing their concerns.

The neonatologists were reported to be moderately helpful (mean response

3.4) in promoting the emotional comfort of the parents. This is probably a result

68

Table 6. Mean Parental Responses to Question 7.*

In general, how would you describe the staff's ability to help decrease your

anxiety and make you feel more comfortable?

MEAN PARENTAL

 

RESPONSES RANGE
a. The neonatologists 3.4 (1-5)
b. The nurses 4.9 (4-5)
c. The social workers 3.5 (2-5)
d. The residents 3.7 (2-5)

N=11

*See page 64 for an explanation of the scales used.

69

of the fact that the neonatologists must divide their time between all of their
small patients, and consequently do not have the time to provide as much

individual attention to each family. Several parents commented that they would
have appreciated more involvement with these doctors, but that they were not
available at the times when parents visited. The inconsistent philosophies of the
different neonatologists was also cited as problematic and, oftentimes, stressful.

Activities which were reported as the most reassuring were those which
involved the parent's direct participation. (See Table 7.) Seeing and touching
the infant and holding the baby, both had scores of 5.0. Having a picture of the
infant, actual caretaking of the baby and talking with the staff were also highly
rated, having mean scores of 4.8, 4.7, and 4.5, respectively. The rooming-in
option was generally not responded to, presumably because it was not an option
offered to any of these parents. Discounting rooming-in, the mean response to
all of the measures listed in this section was 4.4. This indicates that, in general,
these measures provided a fairly high degree of reassurance to these parents.

It would seem that greater involvement was most helpful for this group of
parents. Involvement was achieved either through developing a cognitive grasp
on the situation or participation in nurturant and caretaking activities. These
parents indicated that opportunities to become further involved would have been
welcomed. (See Table 8.) Many of the parents stated that having a veteran
parent would have been valuable (mean response 4.5). Attending support
meetings and having more written and media information available were also
rated positively (4.3 and 4.2 mean responses).

These parents had many valuable suggestions which might serve to ease
this situation for future parents. Some of the parents thought that prenatal

classes should, at least briefly, discuss the possibility of needing the N ICU.

70

Table 7. Mean Parental Responses to Question 10."I

What measures did you find reassuring?

a.

b.

c.

e.

N=11

MEAN PARENTAL

 

RESPONSE

Seeing and touching your baby 5.0
Having a picture of your baby 4.8
Seeing your baby in clothes 3.8
Holding your baby 5.0
Bringing in toys, clothes, pictures 3.8
Talking with the staff 4.5
Talking with other parents who had or previously

had, an infant in the NICU 4.2
Actually caring for your infant 4.7
Rooming in (Item eliminated)

The discharge teaching 3.9

*See page 64 for an explanation of the scales used.

w
(5)
(3-5)
(2-5)

(5)
(2-5)

(3-5)

(3-5)
(4-5)

(3-5)

71

Table 8. Mean Parental Responses to Question 11.*

Do you feel that any of the following would have been helpful?
MEAN PARENTAL

 

RESPONSE RANGE
a. Having "veteran parents visit to share
their experiences 4.5 (3-5)
b. Having weekly support meetings on the unit 4.3 (4-5)
c. Having slides, videotapes and better written
materials explaining the problems of the newborn 4.2 (1-5)
d. Being more involved in the baby's care 4.1 (2-5)

*See page 64 for an explanation of the scales used.

72

These parents thought that perhaps if parents were at least aware of this as a
possibility, it would come as less of a shock.

It was also thought that the staff should prepare the parents for the
infant's appearance before seeing the infant for the first time (n=3). One mother
suggested showing the parents a picture first.

Some of these suggestions were directed specifically to the parents. One
mother stated that couples with infants in the NICU should "draw together as a
couple". Others felt that the parents should keep abreast of their child's
condition at all times.

Several of the mothers described how difficult it was to have to remain in
the maternity unit. It was suggested (n=4) that not only should these mothers not
be placed in a maternity unit but that attempts should be made to put mothers
of infants in NICU in the same rooms. They felt that this would provide them
extra support at this very difficult time.

Mothers of transported infants seemed especially left out at this time.
Often, rigid hospital policies at the mother's hospital prevented the mother's use
of the phone to make long distance phone calls to the NICU. These mothers
were not offered the opportunity to be transferred with their infants but would
have appreciated this option. One mother stated that she was never contacted
by any of the physicians. Her husband would travel back and forth between the
two hospitals, became very tired and often would not remember information
about the baby. Clearly, this is an area which requires the attention of the NICU
staff.

Lastly, a majority of the parents felt that active parent to parent support
should be reinstituted in this hospital. Most stated that they had not had the
benefit of talking with a veteran parent but thought that this would have been

helpful. As one father put it, "Many parents in the past have greatly appreciated

73

and benefitted from these visits in a way that no staff member could understand
or duplicate." It was also suggested that the parent support group might also be
useful to parents after the infant's discharge from the unit, as this was another

time of stress and uncertainty.

Limitations

 

The results of this questionnaire must be used cautiously. There are
several reasons for this. The most obvious is the small number of parents in the
sample. Further studies with a larger sample size would be necessary in order to
be able to generalize these results. The variability between the NICUs and their
staff is also a factor to be considered in relation to this questionnaire. The
philosophy and focus of care may vary greatly between units. Without further
study including several units, the responses of these parents from one NICU
cannot be assumed to be typical. Lastly, the fact that these parents were
members of a volunteer support group may reflect certain personality
characteristics. These characteristics may reflect a certain type of coping
pattern, such as Newman's "coping through commitment" discussed earlier
(198 0). A future study of this type could partially control for these variables by
offering the questionnaire to all parents near the time of the discharge. A study
should ideally include several units to improve the generalizability of the results.

While this initial study was small and limited in scope, some valuable data
was obtained. The responses of these parents provided many insights into the
parental perspective into this situation. Based upon this information,
interventions can be designed and evaluated which will better meet the needs of

families with infants in an NICU.

74

Discussion

There appeared to be several themes which occured throughout this
questionnaire. One of these related to the care of parents of an infant which
required transport to the NICU. These parents had a unique set of needs which
were not being met. A few of these parents mentioned that they would have
liked to have been offered the option of being transported along with their
infant. Having mother and infant in two separate hospitals placed added
pressure upon the father. He had to divide his time between the two hospitals as
well as attending to the care of any siblings. It was much more difficult and
expensive for these parents to maintain any degree of contact with the staff or
even their infant.

It was also expressed by these parents that the visits of veteran parents
was a very worthwhile program. Currently, the program at this hospital is not
functioning as actively as it once did. Many of these parents did not have access
to the group at a time when it would have done the most good. Many of the
parents stated that it would have helped to have been able to share their
experiences with someone who could truly empathize with what they were
feeling at that time. This would appear to be a worthwhile program for the
NICU staff to implement for parents.

Many of the parents indicated that they would have appreciated more
knowledge about premature and critically ill infants. One mother said, "The
unknown and not knowing what to fear is worse than knowing the truth." Having
a comfortable knowledge base helps some parents gain a sense of control over
the situation. There are others who do not respond in this fashion. Another
mother states, "Sometimes ignorance is bliss." This is a point well taken. Staff
should determine the degree and amount of information that parents wish to

have. Their needs should be respected.

75

Aside from a few of the environmental characteristics which were more
personally related to their infants, parents did not express major problems with
this area. One mother stated that she was just tuned into her infant when she
was in the unit and hadn't really taken note of what was going on around her.
Some of the stimuli helped to provide a sense of reality and normalcy to the
environment. One father felt that, "the environment on a whole was calm and
not like (one would have) imagined for an ICU." Perhaps this reflects that the
parents are not exposed to the stimulation of the unit for prolonged periods as
are the staff and infants. It is possible that they are consequently not subject to
its detrimental effects. They may also be preoccupied with their own infant and
consequently may "shut out" the excess stimulation in order to focus their
attention on the resolution of their own personal crisis. While the health hazards
described earlier cannot be ignored, it is reassuring that many parents do derive
comfort from the environment. Sensitivity on the part of the staff in terms of
controlling unnecessary environmental inputs may provide further reassurance.

The use of primary care nursing was a unanimous success in the eyes of
these parents. It was reported as having been helpful by all of the parents who
had participated in this study. Parents reported feeling that these nurses
genuinely cared for their child, and themselves as well. They also felt at ease
expressing their concerns and asking questions. It would seem that the parents
of infants who had been transported would derive extra benefit from primary
care nursing if such care is available. A primary care nurse could provide the
extra attention and reassurance that these families appear to need.

In summary, parents reported a wide variety of emotional, somatic, and
behavioral responses when faced with a critically ill newborn. The contributions
of the environment to the parents levels of comfort and anxiety were discussed.

Lastly, measures which helped parents to alleviate fears were presented. In the

76

following chapter, this information will be integrated with that derived from the
literature review. Implications for practice will be presented along with

suggestions for future research.

CHAPTER IV

CONCLUSIONS

Implications For Practice

The crisis that parents experience when their infant must be admitted to
an intensive care nursery is, indeed, difficult and stressful. This crisis is
disruptive to the family system at many levels. It interrupts the normal
transactions which occur between parent and infant. It also depletes the family's
physical, financial, and emotional resources. As discussed in chapters one and
two, there are interventions which can be provided by the NICU staff which can
ease this situation for these parents. In the remainder of this thesis, the
implications of the literature review and the questionnaire results will be
discussed concomitantly. Based upon this final review, possible interventions and

research questions will be identified for future study.

The Environment

 

The NICU environment has rarely been described in a positive fashion in
the literature (Gowen, 1979; Falk and Woods, 1973; Miller et al., 1974; Long et
al., 1980; Agnostakis et al., 1980; Bess et al., 1979; Kellman, 1982). The noise,
the sights, and the hectic pace all contribute to a high stimulation environment.
To those who are continually exposed to this environment, as are the patients
and staff, definite health hazards exist. In the questionnaire, there were a wide
variety of responses to the questions concerning various inputs from the
environment. It was interesting to find that several of the parents found the

environment reassuring. This reassurance was derived from the fact that these

77

78

parents were able to physically see that their infant was receiving "intensive
care". Thus, they knew that everything possible was being done for their child.
It must be recognized, however, that the parents were retrospectively reporting
their responses. This time lapse may have altered these parents' memories and
interpretations of these events.

Parents also reported that a sense of normalcy was derived from the
"social air" of the unit. Staff and parents routinely chat across the room or over
the isolettes. The conversations are, as often as not, unrelated to patient care.
This may be a key element in providing the normalcy which many of the parents
expressed as comforting. The fact that the staff could be discussing such
mundane and everyday topics may have helped the parents to feel that things
were not as bad as they thought. On the other hand, such conversations may
appear to be callous to parents who are experiencing grief responses.

One final explanation for the discrepancy between the parental responses
to, and the literature's descriptions of, the NICU environment is found in
Lindemann's discussion of grief responses. Lindemann (1965) describes these
grieving persons as being preoccupied and having selective attention. In order to
most efficiently deal with the crisis these parents may have unconsciously tuned
out the extraneous inputs of the environment.

Kellman (198 2) described several adaptations which could provide a safer
environment for the patients and staff. At the same time, those characteristics
from which parents were able to derive comfort could also be preserved. Some
of the major contributors to the excess noise in these units were variables which
could be easily controlled by the staff. Included are the volume of conversations
and radios, the slamming of doors and diaper pails, and so on (Kellman, 1982;
Miller et al., 1974; Woods and Falk, 197 ; Bess et al., 197 9; Long et al., 1980).

Inservices for the staff as to the problems which result from the excess noise as

79

well as how noise levels can be controlled is the first step. Bess et al., (1979)
reported that this step alone reduced the noise to healthier levels. The
American Academy of Pediatrics Committee on Environmental Hazards suggests
the periodic measurement of ambient noise with a sound level recorder will serve
both to increase staff awareness and help to identify trouble areas (Miller et al.,
1974). Kellman (1982) further suggests the use of architectural planning in the
design of new units which would incorporate special materials and spatial
arrangement to absorb sound waves. Equipment rearrangement was also
suggested. An example of this would be moving loud equipment, such as the
centrifuge, out of the immediate patient care areas.

Environmental controls must also extend to the visual field as well. Recall
that parents responding to the questionnaire perceived certain sights, such as the
tubes and equipment on their and other infants, as highly anxiety provoking. One
mother responding to the questionnaire still recalled the disturbing sight of all
the bruises which resulted from the attempts to insert IVs. (See Table 5.)

There were only a few mentions of the problem of disturbing visual inputs
mentioned in the literature. Jacobson (197 8) and Astbury and Yu (1982) cited
the impact of certain sensory inputs, which included the visual, as a stressor to
the nursing staff. Harper, Conception, Sokal, and Sokal (197 6) mentioned that
the parents involved in their study reported increased anxiety as a result of the
sight of other sick babies in the NICU. These parents felt that this increased
their concern for their own child.

These studies for the most part mention the effects of sensory impact upon
the staff or parents only as a result of research in other areas. What is needed is
a thorough study which would assess directly the effects of the sounds and sights
of the NICU. Such a study would provide the documentation which is necessary

to bring about environmental restructuring to meet the emotional and physical

80

needs of patients, family, and staff. Pending the results of such research, the
NICU staff should use discretion and common sense to alleviate the impact of
negative sights in the unit. Invasive or traumatic procedures, such as
intubations, exchange transfusions, and codes, should not be done in the presence
of parents. Aesthetic measures, such as removing or covering stained linen or
clothes, take little time. Some parents reported that seeing their infant dressed
helped to relieve some of their anxiety (see Table 7) and made their infant look

more like a baby should.

The NICU Staff

 

The problem of staff burnout in the NICU has been well documented
(Astbury and Yu, 1982; Jacobson, 1978; Gribbons and Marshall, 1982; Marshall
and Kasman, 1980; Schmidt, 1977; Walker, 1982). In all of these studies, the
effects of burnout on the effectiveness of the staff was enumerated. A nurse or
physician who is suffering from this "job depression" is apt to lose his/her
"creative involvement" with his/her career, and eventually will leave (Marshall
and Kasman, 198 0). The staff must be responsible for the problem of burnout. In
order to ensure that the staff is capable of responding to the emotional needs of
the families, routine measures should be instituted to deal with unit problems.
Just what these measures should be is another question. Despite the ample
documentation of the existence of burnout, there is a paucity of research
regarding its treatment and prevention. The measures which will be discussed,
therefore, are only suggestions which have been made by several sources.
Research will need to accompany these measures to determine their
effectiveness. Effectiveness should be made at two levels: on an individual

basis and on an administrative level.

81

A. Unit Orientation

The nursing orientation can be used as the initial point of intervention for
staff burnout. Nurses who are new to the NICU have a different set of stressors
than do the more experienced nurses. The new nurse is more concerned about
skills, knowledge, and competence in this environment (Walker, 1982; Jacobson,
1978; Gribbons and Marshall, 1982). The nurse may also feel uncomfortable in
providing comfort and support to the parents at this time due to her inexperience
and anxiety (Gribbons and Marshall, 198 2). The orientation period can be used to
assist the nurse orientee to cope with these problems. In addition to teaching
them the skills and knowledge which will be needed in the unit, therapeutic
communication skills could also be taught at this time (Sherman, 1982; Gribbons
and Marshall, 198 2; Schmidt, 1977). Offering crisis theory as part of orientation
would provide the orientee with a framework for understanding and empathizing
with the parents (Caplan, 1960).

In addition, it is important to help these new nurses anticipate the stresses
which they will encounter and to help them develop effective techniques for
stress reduction. These methods for personal stress reduction should then be
incorporated into a daily routine. Examples of these methods would be
meditation, biofeedback, jogging, music, and so on. Such a routine is necessary
to help nurses maintain an awareness of their stress levels as well as to actively
seek its reduction.

Effective communication skills will play an important role in coping with
stress encountered at all levels of the NICU. Teaching communication skills
during the orientation period will lay the groundwork for the future by aiding the

nurse's ability to confront conflicts as they arise (Gribbons and Marshall, 198 2).

82

The nurse orientee should never be placed in a situation of having to cope
with an emergency or new admission on his/her own. This is neither safe for the
patient nor the nurse. Utilization of a preceptor is an effective way of
developing the orientee's skills to the point where he/she is both capable and
comfortable in accepting the full responsibility for a patient's care (Walker,

1982; Schmidt, 1977).

B. Unit Support Groups

Regular, interdisciplinary staff support groups were identified as a
potential avenue for dealing with problems leading to burnout (Gribbons and
Marshall, 1982; Marshall and Kasman, 1982; Schmidt, 1977; Sherman, 1982).
These meetings can be used to discuss specific issues or general topics. Gribbons
and Marshall (198 2) reported that their group initially was not effectual. Some
of the nurses felt that while much was said in these meetings, little was ever
actually accomplished. This problem could potentially be overcome by providing
structure to these meetings. Having a person who has been trained in group
communication skills to lead the discussions may be helpful in providing such
structure. A specific agenda which includes problem discussion, problem solving,
and the delienation of specific interventions might also help to alleviate

frustration resulting from ambiguous solutions.

C. lnservice

As the field of neonatology is changing rapidly, nursing must keep pace to
maintain a high quality level of care. Insecurity as a result of the pressure to
remain informed was also a frequently cited source of stress for the nurse
(Astbury and Yu, 1982; Schmidt, 1977; Jacobson, 1978; Marshall and Kasman,

1982; Gribbons and Marshall, 1982; Frader, 197 9). Providing regular inservice

83

training accessible by all shifts, was suggested by all sources as a means to
alleviate such concerns. lnservice training should include new theories,
techniques, and technology. Inservices could also be utilized to practice
communication skills through role playing and exercises. Stress reduction

techniques could also be presented at such sessions (Schmidt, 1977 ).

D. Staff Liaison Person

There are times when group support mechanisms will not suffice. It was
suggested that nurses new to these units as well as nurses with special problems
will not derive benefit from group meetings (Gribbons and Marshall, 1982; Cape,
1982). For these circumstances, a special liaison person was suggested as a
useful alternative. This person would be an individual with special training in
counseling and communication, such as a social worker (Schmidt, 1977),
psychiatrist (Sherman, 1982), or a clinical nurse specialist (Cape, 1982). This
individual would assist the individual or the group to learn how to effectively
cope with the tension of their job and provide support as this task is

accomplished.

E. Primary Care Nursing

It has been suggested that a major cause of burnout is an imbalance
between the rewards and the negative drains of this system (Schmidt, 1977;
Gribbons and Marshall, 198 2). Primary care nursing has been cited as a method
of nursing care which enhances job satisfaction as well as improves patient and
family care (Bresadola, 1977). Recall from the questionnaire results that parents
derived a sense of comfort and trust from this mode of care (see page 67).
Bresadola suggested that this parent-nurse interaction serves to improve the

nurse's morale (1977). The institution of primary care nursing could help to

84

decrease the problems of burnout in the NICU by allowing for greater autonomy
and responsibility. It must be recognized that the primary care situation may
become detrimental if the nurse becomes excessively involved or if the family
situation becomes too demanding. In these cases, relief from the situation
should be sought by the nurse through involvement of a social worker and

additional nursing support.

F. Positive Reinforcement

Rewards should be added to the NICU system to provide the staff with
recognition for their hard work and dedication. Schmidt (1977) suggested regular
rotation of the nurses through the developmental follow-up clinic. This was
thought to provide some gratification to the staff by allowing them to see the
fruits of their labors. As most infants in the NICU do develop normally, this
experience may reaffirm an individual‘s belief in what is being accomplished.
Schmidt (1977) and Gribbons and Marshall (1982) also suggested some form of
"ranking", or promotional system, which would recognize the physical,
educational, and emotional investment made by the staff nurses. It would also
provide a means of identifying the various levels of expertise, which in turn
would prevent disparity in expectations from creating problems and stress.
Walker (198 2) suggested increased financial incentives although, given the
current economic crisis of the health care system, this is a less feasible
alternative.

Individual staff members also play an important role in the prevention of
burnout. Nurse to nurse as well as nurse to physician conflicts are mentioned
frequently as stressors to the NICU staff (Jacobson, 1978; Astbury and Yu, 1982;
Gribbons and Marshall, 1982; Marshall and Kasman, 1982; Schmidt, 1977).

Schmidt describes this phenomena, stating "People tend to scapegoat, to blame

85

others for what goes wrong, and to engage in backbiting" (1 97 7, p. 39). The staff
of the hospital involved with this study devised a "Regular Incident Report",
designed in a format similar to the accident reports used in all hospitals. Its
purpose was to recognize the staff members for all the positive work that is done
by them. These forms are filled out by individuals to thank or compliment other
staff members for their work. This measure was designed to accentuate the

positive and encourage better staff relations.

G. Supportive Management

The smooth functioning of an NICU is dependent on effective management.
It is the function of both nursing and medical management to facilitate the
delivery of health care to the infants and their families by ensuring that an
optimal physical, psychological, and emotional climate exists to enhance this
goal. Gribbons and Marshall (198 2) point out that most nurses and physicians do
not have training in management skills, but suggest that such training is vital to

the smooth functioning of the unit.

H. The Physician

The neonatologist has problems unique to his/her profession. While many
of the interventions discussed thus far would also be helpful to these physicians,
other initiatives are also necessary. For instance, the competing demands of
their personal lives versus the demands of their work was the most frequent
source of stress to the neonatologists in the study by Astbury and Yu (1982).
These physicians carry the ultimate responsibility for the welfare of the infants
in these units twenty-four hours a day. The suggestion of this study for these
physicians was to concern "themselves with less urgent pediatrics and ,delegate.

to other doctors—for example, to senior registars ,residents." (p. 111). The

86

difficulty with this suggestion is that, first, it encourages the neonatologist to
leave the field, something they may not desire to do. This would serve only to
put additional strain on those remaining in the field. It also encourages the
shifting of responsibility onto the shoulders of the residents, physicians who are
still in training. This is neither safe nor is it in the best interest of the resident
physician. Hayden (1 98 2) suggests other measures for these physicians. First, he
suggests that priority setting is essential. He states, "A list or, at the very least,
a mental ordering of priorities decided upon in times of peace and quiet and
forged in the fires of past experience will be of immense benefit when, not if,
conflicts arise among needs, wants, and desires" (p. 78).

He also encourages the use of work related resources such as colleagues
and nurses. He feels that having confidence in those you work with allows your
free time to be unencumbered with concerns for the patients. Lastly, Hayden
considered time away from the unit critical to maintaining peace of mind. Goal
setting, special hobbies and activities, and time with family and friends were
thought by Hayden to be therapeutic . In summary, it was stated, "If he is going
to survive for any reasonable period of time and know some job satisfaction, he
must know himself and his resources and be willing to use them in a creative
fashion." (Hayden, 198 2, p. 81).

The above are all reasonable, feasible, and economical interventions for
the reduction and prevention of burnout in the NICU staff. A combination of
these interventions would, of course, be necessary due to the diverse causes of
this problem. Continuing research in this area is essential in order to prevent

any compromise in the care of these infants and their families.

Parental Reactions
As seen in both the review of literature and the questionnaire results,

parental responses to the crisis of a premature birth or a critically ill newborn

87

vary greatly (Otto, 1980; Duhamel et a1. 1977 ; Benfield et a1. 1978; Prugh, 1953;
Caplan, 1960; Caplan et a1. 1965). (See Table 1.) The importance of this is not
so much to be able to identify what a parent is feeling, but, more importantly,
why. It is important to identify the circumstances surrounding the crisis in order
to be able to support the parents effectively (Hill, 1965; Rapoport, 1965; Otto,
1980; Caplan, 1960).

Two emotions, or responses, to this crisis should be discussed
independently. Guilt was found to be common, both in the literature and in the
questionnaire (Duahmel et a1. 1977; Caplan et a1. 1965; Otto, 1980; Benfield et
a1. 1978; Prugh, 1953). (See Table 1.) The reported causes of this guilt were
quite variable and individual. Due to the frequency with which guilt was found,
this is an area which should be explored with each parent. The opportunity to
express and work through any feelings of guilt is essential for its resolution
(Caplan, 1960; Kennell and Klaus,1982; Sherman, 1982). Anticipatory grief is the
other emotion frequently cited which warrants discussion. While the "Grief"
response was not chosen by the parents involved with this study, it was
interesting to note that many of the responses which were chosen were
symptoms of grief reactions (loss of appetite, inability to sleep, preoccupation,
guilt and sadness), (Benfield et a1. 1978; Lindermann, 1965). It is necessary for
those who work with these families to recognize the presence of anticipatory
grief. It can be observed that, at times, a parent's response to his/her infant's
condition seems disproportional to the severity of the situation. In these
situations, the parent is most likely experiencing anticipatory grief.
Consequently, they will require a greater degree of intervention than was
initially indicated by the status of the infant (Benfield et al. 1978, Harper et a1.
1976).

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Parent-Infant Transactions

The literature review demonstrated that the preterm infant and the infant
who is critically ill will not have the same capacity to transact with their
parents as would a healthy, term newborn (Emde, 1981; Als and Brazelton, 1981;
Als, Lester, and Brazelton, 1975; Gorski, Davidson, and Brazelton, 1981; Divitto
and Goldberg, 1981; Frodi, 1981; Frodi and Lamb, 1978; Goldberg, 1979). This
literature has several implications for this study. First, it is critical that parents
be aware of the alterations in the infant's behavior. The lack of activity and
responsiveness in these infants may cause the parents undue alarm if they are
not alerted to its cause and protective functions. Aside from relieving the
parental anxiety, such knowledge will also assist the parents in altering their
expectations of the infant. In their attempts to elicit social responses from their
preterm infant, parents could cause the infant to further withdraw (Field, 1977;
A15 and Brazelton, 1981; Gorski et a1. 1981). This in turn could further frustrate
the parent. Education of these parents as to the altered patterns of behavior
may help to create more realistic expectations and thus decrease their
frustrations. This education should also include how and when stimulation to the
infant could be provided to achieve maximum benefit for both parent and child.
The Assessment of the Preterm Infants Behavior (APIB), an adaption of the
Brazelton Newborn Assessment Scale, might be an excellent tool for such
teaching (Als and Brazelton, 1981).

As these infants do not appear to communicate their needs with the same
degree of effectiveness as does the term infant, this information should be
provided to parents as well (Goldberg, 1979; Frodi and Lamb, 1978; A15 et a1.
1981; Brazelton, 1973; Divitto and Goldberg, 1981). Such knowledge may also
help to offset a certain degree of frustration which may be experienced in their

early interactions with the infant.

89

It was also suggested that the NICU alter the care provided to these
infants as well as the environment in which this care is provided. The object of
this would be to minimize the stresses to which these infants are exposed
(Goldberg, 1978; Goldson, 1981; Gorski et al. 1981; Brazelton, 1981). By
decreasing the unnecessary stimulation that the infant must contend with, the
infant's condition may improve at a greater rate. The neonate may also have
more energy available for social interactions (Brazelton, 1981; Gorski et al.
1981).

Research needs to be continued in this area to further document the
altered neuro—organization of the premature infant. The implications of these
studies are great, both in terms of parent-infant attachment and neonatal care in
general (Brazelton, 1981; Frodi, 1981; Goldberg, 1978, Gorski et al. 1981;
Goldberg, 1979). Research also needs to be applied to the effects of educational

programs, such as those discussed above.

Extended Family Concerns

Siblings and other significant members of the premature or critically ill
newborn's family are also impacted upon by this situation. If family centered
care is the goal of neonatal intensive care units, then the needs of the extended
family must be addressed as well.

Initially, it was a major concern that the incidence of infection would
increase if parents were allowed to have contact with their infants. This was a
fear which was not substantiated, however, and parental visitation has become a
vital part of the system (Avery, 1981). The same process is now beginning with
the extended family. Early research in this area, such as that done by
Umphenour (1980), has thus far not documented contraindications to sibling

visitations in term nurseries on the basis of bacterial colonization. In order to

90

change current hospital policies, further research which documents that safety
and the desirability of sibling visitation must be completed.

Schwab, Tolbert, Bagnata, and Maisels (1983) took sibling visitation one
step further and evaluated its impact in the NICU. While the sample was small,
the results indicated that visitation was beneficial to these families and not
detrimental to either the infant's or the unit's functioning. Breslin (1977) and
Goldson (1981) both advocated the inclusion of the siblings. The Family Care
Unit described by Goldson did allow such visitation. No problems were reported
as a result.

Data on other extended family visitations was not found. However, it is a
more common practice to allow adult visitation than children. This is most

certainly an area to be explored further in terms of research and documentation.

Interventions

 

There were a wide variety of programs discussed in the literature directed
toward the emotional and psychological support of the parents . Many of the
parents who responded to the questionnaire of this study also had suggestions as
to potential interventions. Some suggested interventions were quite simple in
nature, while others were more complex. These suggestions will be discussed

along with their implications and need for further research and documentation.

A. Attention to Comfort

Green (197 9) criticized the care provided in the NICU as being oriented to
technology, while ignoring the personal aspects of care. He encouraged
attention to the simple things, such as asking a mother how she is recovering, or
inquiring if the parents are sleeping and eating well. Often, these mothers have

undergone difficult, even dangerous, pregnancies and labors. Green stresses that

91

they need to ventilate their experiences. Even more importantly, the mothers
need to feel that the staff is concerned about them as individuals.

This attention to the parents' comfort and to their needs goes a long way.
Recall from the questionnaire responses how parents did indeed focus on "the
little things", both positive and negative. How an isolette door was closed, a
cheery resident who took the time to talk with them each day, even the
wallpaper are examples of how important the attention to details can be to these
parents. These "extras" which take little effort can make a significant

difference in a parent's comfort level.

B. Communication With Parents

Communication with parents is another basic form of intervention provided
by the staff. While it is basic to the care of the parent, it is by no means a
simple task.

Effective communication with parents was stressed by Otto (1980), Kennell
and Klaus (1982), Breslin (1977), Green (1979), Sherman (1982), and Taylor and
Hall (1981), among others. Realistic optimism, explanations at a level the
parents can comprehend, and consistency in the information which is provided
were cited as essential components of communication with these parents. The
establishment of a supportive relationship was considered critical to healthy
crisis resolution by the family (Breslin, 1977).

It was also stressed that such communication should be paced to the needs
of the parents. Parents may not be ready to assume a total understanding of the
problems at hand. Due to the stress that they are experiencing at this time, they
may be unable to comprehend such information. Several repetitions may
consequently be required (Breslin, 1977; Otto, 1980; Green, 197 9; Sherman, 1980;

Kennell and Klaus, 1982). This point was also reflected in some of the

92

questionnaire responses. Recall the response of the one mother who perceived
ignorance to be bliss at this time. Green (1979) felt that such denial was a
healthy response and should only be considered a problem if it was prolonged.

Ten out of the eleven parents who responded to the questionnaire felt that
the information regarding their child was presented in a way that they could
understand. One parent felt that it had been too pessimistic and one felt that it
had been presented inconsistently by the various staff members. This problem of
inconsistent presentation of information might be partially alleviated by the use
of a liaison person, as was suggested by Breslin (1977), Otto, (1980), Sherman
(1980) and Cape (1982). This person could be a social worker, nurse clinician, or
psychiatrist. The role would be one of a consistent contact person whom parents
could utilize for both information and its interpretation, and also for support in
crisis resolution. This person would in turn communicate to the staff the
individual needs of each parent. The liaison person would also be available to
take up the slack when staff pressures preclude their direct attention to the
family. Psychosocial rounds performed on a regular basis would be an effective
avenue for interstaff communications regarding the status of the family.

Parents who responded to the questionnaire in this study indicated that
they would have benefited from more supplemental information. (See Table 8.)
Films, videotapes, slide presentations as well as better written material were all
ideas which parents thought would have been helpful. Weekly meetings are used
by some units to provide information and opportunities to ask questions. This

was also thought to be a valuable idea by the parents in this study.

C. Primary Care Nursing
The use of primary care nursing in the NICU is an intervention which

serves many functions. As has already been discussed, primary care nursing

93

provides rewards to the nursing staff and improves their morale. It also
improves the care of the infant by providing greater consistency. The primary
care nurse has a more thorough knowledge of the patient's history (Sugar, 1978;
Bresadola, 197 7). The parents also derive benefits from the primary care nursing
system. This system decreases the number of staff that the parents are exposed
to and, as a result, decreases the conflicting information and interpretations
they may receive. It also allows them to develop a trust and rapport with one or
two of the nurses which provides a greater potential for a helping relationship
(Sugar, 1976; Otto, 1980; Bresadola, 1977; Harmon, Glicken, and Good, 1982).

According to the results of the parents polled in this study, primary care
nursing was an effective mechanism for decreasing their anxiety. (See page 67.)
This was found to be reassuring to them, perhaps allowing them a greater sense
of control over the situation. Parents also felt that they were more comfortable
in expressing their concerns.

Based upon the various merits of this system of care for patients, family,
and staff alike, this would seem to be an effective intervention which could be
implemented. Research should accompany the implementation of primary care
nursing in order to document its effects and to identify any unforeseen

complications.

D. Prenatal Classes

Two of the parents indicated that the introduction of the neonatal
intensive care unit during prenatal classes might ameliorate some of the
immediate shock of the situation. They felt that if parents were aware of the
possibility of complications and of the facilities to handle such complications,
they might be better prepared should the situation occur. Breslin (197 7) agreed

with this viewpoint, stating that this would provide intervention at the earliest

94

possible point. Harmon, Glicken, and Good (1982) also identified this benefit.
They also felt that the prenatal classes could play an important role in
"dispelling unrealistic notions about the attachment process" (p. 30). They felt
that this might help to alleviate guilt feelings which may arise when the delivery
process does not go as anticipated. Hubner (198 3) and Dunn (198 2) also supported
the introduction of regionalized neonatal care during childbirth classes to try to

dissipate the shock of such a situation on the parents.

E. Parent Support Groups

Parent support groups were widely reported in the literature (Duhamel et
al. 1977; Breslin, 1977; Dammers and Harpin, 1982; Erdman, 1977; Kennell and
Klaus, 1982; Mangurten, Slade, and Fitzsimmons, 197 9; Minde, Shosenberg,
Marton et al. 1980; Otto, 1980). Minde et al., (1980) found that mothers
involved in their support group visited more than did the control mothers.
Dammers and Harpin (1982) found that such meetings provided the staff with
greater insight and sensitivity to the problems of their parents. Minde (1981)
describes how the parents of infants in the NICU have difficulty in
conceptualizing their own caretaking roles as a result of the altered environment
and the altered transactional processes between themselves and their infants.
Minde perceived that the use of veteran parent visits was helpful in assisting the
new parents define their roles within the context of the NICU.

Questionnaire responses indicated that these parents perceived this to be a
valuable intervention. One father stated that the veteran parents could provide
the insight, advice, and empathy that could not be equaled by any staff member.
It was also indicated that the support of these parents would have been
worthwhile not only during the hospitalization, but also at the time surrounding

the discharge. (See Tables 7 and 8.)

95

The benefits of such a program are clear. The veteran parent truly is a
valuable resource. However, the development of this type of program must be
carefully planned and executed. Issues such as patient confidentiality must be
addressed. Problems with parents who are still working through grief and anger
surrounding this crisis have been reported (Mangurten et al. 1979). It must also
be recognized that this program does not meet the needs of all parents. Some
parents may be in need of professional assistance while others may not be ready
to face the realities that such meetings would entail (Shosenberg, 1980;
Mangurten et al. 197 9, Minde et al. 1980; Duhamel et al. 1977).

Such problems are not insurmountable. A referral system or the utilization
of parental requests for this service are two possible ways to deal with the
confidentiality issues. The veteran parents should be interviewed and screened
as suggested by Otto (1980). This will help to identify parents with unresolved
issues related to their NICU experience. Special training could be provided to
the parent who will be participating in the visitation program. Such a model was
used in a similar parent visitation program for first time parents (Boger, 1983).
The parent volunteers were given thorough training to prepare them for their
supportive and informational roles. The adaptation of Boger's Perinatal Positive
Parenting model to the NICU would serve the needs of these parents well. At
the same time, its structure and design would prevent the occurence of such

problems as described earlier.

F. Room Assignments

The room situation of an NICU mother was cited as problematic by three
of the mothers in this study. One mother said that it made her feel guilty being
in the room with a mother with a healthy infant. She felt that this also

increased her discouragement when she could not hold her infant while the other

96

mothers on the postpartum unit were holding theirs. Another stated that this
situation was very depressing, and at times, unbearable. These mothers
suggested being placed in a different unit. They also felt that attempts should
be made to assign these women to the same room. They felt this would have
allowed them to talk with someone who was in the same situation.

Benfield and his colleagues (1976) recognized the necessity for such
flexibility in room assignments. They found that not all mothers desired
separate rooms. Some of the mothers in their study found reassurance in being
in rooms with healthy babies. They encouraged giving an option to the mother as

to which situation would best meet her needs.

G. The Transport

A transported infant is an added stress to the parent. These parents are
limited in their ability to see and interact with their infant and the unit staff.
Taylor and Hall (1981) found in interviews with parents whose infants had been
transported that "their fantasies about the infant's appearance, suffering, and
general condition were almost always far worse than reality" (p. 330-331). They
also found that these mothers experienced a certain amount of guilt as a result
of not being at their child's side during its critical period.

The most obvious answer to this problem is the antenatal referral of both
mother and fetus to the perinatal center. This has both physiological and
psychological benefits. Antenatal referral decreases the incidence of perinatal
morbidity and mortality (Avery, 1981; Taylor and Hall, 1981). It also facilitates
communication between the parents and the staff. Parents have greater access
to their child. The high risk centers are also more attuned to the special
problems, concerns, and needs of the parents and have programs and staff which

are geared toward these needs (Taylor and Hall, 1981). The smaller community

97

hospitals, on the other hand, often are less aware of the needs of these families.
Communication between the mother and father and between the parents and the
NICU may be impaired as a result of rigid visitation policies (Benfield et al.
1976; Hubner, 1983).

Several of the parents who were affected by transports indicated that
there were indeed such problems with the outlying hospitals. One mother
reported that she was not allowed to make any long distance calls to the NICU to
determine the status of her infant, nor did she ever receive any calls from the
baby's physician. Her husband, trying to maintain visits at both hospitals, quickly
tired and was unable to remember information to relate to her. Other problems
which were described by these parents were financial stresses and an inability to
communicate routinely with the NICU staff.

There are many alterations which could be made in this system to alleviate
many of these problems. These begin at the time of transport. The transport
team should talk with parents and discuss why the transport is necessary and
what the immediate plans and prognoses are. Eager (1977) reports the use of a
short filmstrip which is shown to the parents while the team is stabilizing the
infant. The film shows the parents the NICU, the equipment, and the staff. This
was reported to have been successful in allaying some of the fears and anxieties
of these parents. Booklets with explanations of unit policies, brief descriptions
of the unit, and other pertinent information are also given at this time. Many
transport teams have begun to carry a Polaroid camera with them, so that
pictures of the infant can be left with these parents. Parents are encouraged to
see, touch, and if possible, hold their infant prior to the infant's departure.
Positive aspects of the infant's appearance and condition should be identified at

this time to provide hope to the parents (Hubner, 198 3; Eager, 1977).

98

If maternal transfer is not a feasible option, other measures have been
suggested to improve the communication between the mother and the NICU
staff. A nurse or physician should initiate a call to the mother at the referring
hospital after the infant is stabilized and then at least daily thereafter. This
ensures a stable communication and signals to the parents that the staff is
concerned (Hubner, 1983; Taylor and Hall, 1981). Other units have sought to
improve communication through the installation of toll-free lines (Benfield et al.
1979) or videophone systems (Hubner, 1983). The benefit of the videophone
system is that parents can actually see their infants while they talk with staff.

A primary care nurse should be assigned to all transported infants and their
families. This nurse would then become familiar with the special needs of these
families. In turn, the individual attention provided by the primary care nurse
may increase the families' sense of control over the situation (Harmon, Glicken
and Good, 1982).

One transported mother suggested that a veteran parent would have been
especially helpful to her. This would not be a difficult task, once a program at
the regional center was established. Again, the Perinatal Positive Parenting
model would be a useful program for this purpose (Boger, 198 3).

Continuing outreach programs to the smaller community hospitals can also
do much to improve the care of the parent whose infant requires transfer to the
NICU. In addition to providing inservices on the stabilization and care of the
sick infant, awareness of the problems encountered by these parents could be
stimulated. Flexible visitation policies should be encouraged so that these
mothers are not cut off from their support systems, which they so deeply need at
this time (Breslin, 1977; Hubner, 198 3; Taylor and Hall, 1981).

The return transport of the infant to the community hospital is

recommended for both economic and emotional reasons (Jung and Bose, 1983;

99

Kennell and Klaus, 1982; Hubner, 1983). This eliminates costly travel and long
distance phone calls. It also opens up beds in the NICU to be available for the
more critical patients (Jung and Bose, 1983). The transition back to the
community hospital is not always welcomed by parents, however. Once they
have become adjusted to the NICU and its staff, it is difficult to readjust to a
new environment. This situation may renew feelings of disequilibrium. It may
also cause parents to feel a loss of control and security (Hubner, 1983). For
these reasons, parents should be given ample preparation. They should be
encouraged to visit the new hospital and become acquainted with the staff
(Hubner, 1983). This concept of return transport is relatively new. While it has
many positive elements, there are indications that this is not an easy transition
for some parents. Their equilibrium is still in the recovery phase from the initial
crisis, and their ability to adapt at this time may be impaired. For these
reasons, further research is needed in this area. The positive and negative
aspects of return transports need to be determined, especially from the

perspective of the parents.

H. The Discharge

Some parents view the discharge as yet another crisis that must be faced
(Lund and Lefrak, 1982; Cagen and Meier, 1979). In order to lessen the impact of
this period, parents should be encouraged to begin participating in the care of
their infant early on. This allows them to practice their skills and develop
confidence in them. Parents should be allowed to determine their own readiness
and pace. Again, the primary care nurse can play an important role. The
rapport established with the parents may serve to facilitate their comfort in

trying new skills.

100

The information given to parents in preparation for the discharge should
ideally encompass more than just formula preparation and bath demonstration.
Premature infants have additional needs unique from those of the term infant.
As discussed, they also have altered responses to the environment and to social
situations. Awareness of these needs may prevent unnecessary frustration and
anxiety on the part of the parents. Just as the Brazelton Newborn Assessment
Scale has been utilized to increase parent's awareness of the capabilities of the
term infant, so could the Assessment of the Preterm Infant's Behavior Scale be
used with the premature and his parents (Brazelton, 1981; A15 et al. 1981).

In addition, the parents of a preterm infant need to be informed that their
infant will be developing according to the gestational age and not according to
the chronological age. This may help to decrease the expectations of these
parents and alleviate concerns about delayed development.

Discharge education has been a standard practice in all areas of nursing
care. However, it would be helpful to evaluate the inclusion of this additional
information in the discharge planning of the NICU staff. It would be important
to know if such teaching did, in fact, facilitate the parents' understanding and

consequent expectations for their infant.

L The Family Care Center

The family care center discussed by Goldson (1981) would seem to be an
excellent model of care for the entire family. This type of unit is based upon the
needs of the infant and the family system and not upon a traditional medical
model of care. Most infants do not require intensive care for the entirety of
their NICU stay. Many are convalescing and growing during much of their
hospitalization. It would seem that, for these infants at least, much benefit

could be derived from their removal from an intensive care environment. This

101

may serve to enhance their recovery and improve their ability to interact with
their parents (Brazelton, 1981; A13 and Brazelton, 1981; Gorski et al. 1981). It
would also allow the family to assume a greater proportion of their infant's care
and develop confidence in their caretaking skills. This would help to relieve
some of the pressure experienced at the time of discharge. The extended family
involvement would provide the parents with their natural support systems. It
would decrease the fragmentation of the nuclear family at this time. Siblings
would not be isolated from involvement, as they are under current systems
(Goldson, 1981).

While not every hospital would have the room or the facilities to develop
such a unit, it would seem possible that many of the unique features of Goldson's
unit could easily be adapted to almost any NICU. The flexible family visiting
policies, the greater involvement of the parents in the caretaking and decision
making, and most important, the "normalization" of the environment to enhance
the infant's recovery are measures which could be incorporated into current
policies. Granted, more research is needed to document the safety and
advantages of these steps. Such research is necessary to prevent NICU policies
from becoming stagnant and outdated. If neonatal intensive care units are to
provide true family centered care, then interventions such as these must be
sought for, researched and documented.

SUMMARY

It was the intention of this study to determine the unique needs and
concerns of parents who have their newborn admitted to a neonatal intensive
care unit. This study was also directed toward determining how the NICU could
best meet these needs. Parents arrive at this crisis with widely varied
backgrounds, circumstances, resources, and perceptions of the situation. Their

individual coping patterns are also variable. The NICU staff must be able to

102

respond to the uniqueness of each family system with flexibility and sensitivity.

The care provided must be adapted to each family's unique needs.

APPENDICES

APPENDIX A

THE COVER LETTERS

Dear NICUF Member,

I hope you are enjoying your summer. It is hard to believe that it is almost
half over already!

I was recently approached by Muri Robertson, one of the NICU nurses who
is currently working on her master's degree at Michigan State. As explained in
her cover letter, she is working on a study which is attempting to explore ways
to help parents with premature and ill newborns in the NICU. Enclosed is a
questionnaire which is a part of her study. She has asked if we could help by
providing feedback by answering these questions. This is strictly voluntary on
your part. Your answers will remain confidential. Should you decide to
participate, please fill out the questionnaire and return it to Muri in the envelope
provided. Due to time constrictions, please try to have it completed and mailed
by "July 22. Again, please do not feel obligated. If you have any questions
contact Muri at 372-2288. She would be happy to answer any questions you
might have.

I hope to see you at the July Meeting!

Sincerely,

I""If you receive the questionnaire in time and wish to participate, I will have an
envelope addressed and stamped at our July 18th meeting for your convenience

in mailing back to Muri.

103

Mary E. Robertson (Muri)
1327 Edward Street
Lansing, Michigan 48910
(517) 372-2288

Dear NICUF Member:

As I am sure you will agree, having an infant admitted to the Neonatal
Intensive Care Unit (NICU) is a stressful and traumatic experience for most
parents. While there are some aspects which cannot be changed and made easier
for the parent, there are some parts which can. Currently, I am a student at
Michigan State University finishing up work on my master's degree. I am
involved in a study looking at those components of the NICU experience which
can be altered to help decrease the negative impact upon the parent. The results
of this study will be used to help find ways to provide parents with extra support
during this most important time for themselves and their baby. They will also be
used to help plan programs which would try to eliminate some of the unnecessary
stresses of the NICU situation.

Your response to this questionnaire will help in this process. It will provide
some feedback on some of the ideas that are being looked at. It is important to
know how parents like yourself perceived the experience as well as what you felt
made the situation better or worse. As everyone responds to this situation
differently, it is important to obtain as many opinions as possible. If you have
any additional comments or suggestions, these would be most welcome.

While I do hope you will share your responses with us, answering and
returning this questionnaire is voluntary on your part. Should you decide to
participate, your answers will be kept strictly confidential and anonymous. If

you are willing to participate, please fill out the form completely, adding any

104

comments you might have. Then, simply return it in the enclosed self-addressed
envelope. Please do not put your name on the questionnaire.

I believe that this study will help the NICU staff to better meet the needs
of parents. Having a newborn in need of NICU care is a scary experience. With
greater consciousness and awareness of the needs of parents at this time,
perhaps the staff could provide better, more insightful care.

The results of this study will be provided to NICUF upon its completion,
hopefully in late August. In the meantime, if you have any questions or
suggestions, please feel free to contact me. I would be most willing to try and
answer any questions that you might have.

Sincerely,

Muri Robertson, R.N.

105

APPENDIX B

THE QUESTIONNAIRE

A HEURISTIC STUDY
OF THE IMPACT OF THE CRITICALLY ILL NEON ATE
UPON THE PARENT

1. Parents have expressed a variety of emotions in response to having an
infant admitted to a Neonatal Intensive Care Unit (NICU). Below are
listed some of these responses. Please circle those you feel most closely
represent how you felt at the time your child was admitted to the NICU.
Feel free to add those not listed.

Anxiety Fear of Loss Love

Concern Apprehension Hope

Guilt Depression Fear of Unknown
Empty Resentment Hopelessness
Anger Failure "Left Out"

Low Self Esteem Cheated Grief

Other (Please Specify)
2. At this time, did you experience any of the following?

a. Loss of appetite Yes No
b. Increased appetite Yes No
c. Inability to sleep Yes No
d. Increased irritability Yes No
e. Cried easily Yes No
f. Mood swings Yes No
g. Physical complaints (Headaches,

Stomach complaints, etc.) Yes No
h. Fatigue Yes No

i. Alterations in relationships with
family and friends Yes No

j. Other (Please Specify)
3. Please describe briefly how you attempted to cope with the admission of

your infant to the NICU. For example, did you try to avoid or deny the

situation, talk it over with friends and family or pray?

106

There are several questions which ask you to give a response based on a
continuum. A five point scale is used. Please circle the appropriate number,
from 1 to 5, which best describes your response.

1. DIDN'T AFFECT ME
DIDN'T CAUSE CONCERN
NOT AT ALL HELPFUL

2. RARELY AFFECTED ME.
RARELY CAUSED CONCERN
RARELY WAS HELPFUL

3. NEUTRAL

4. OFTEN AFFECTED ME
OFTEN CAUSED CONCERN
OFTEN WAS HELPFUL

5. VERY MUCH AFFTECTED ME

CAUSED MUCH CONCERN
WAS VERY HELPFUL

107

4. The NICU environment can be a stressful place in itself. Do you feel that
any of the factors listed below affected your anxiety levels? Please circle
the appropriate response.

DIDN'T VERY MUCH

AFFECT AFFECTED

ME NEUTRAL ME

a. SIGHTS

i. The equipment in the unit. 1 2 3 4 5
ii. Other babies in the unit. 1 2 3 4 5
iii. The activity in the unit. 1 2 3 4 5
iv. Other (Please Specify) l 2 3 4 5

b. SOUNDS
i. General noise levels in the rooms
ii. The alarms
iii. Conversations of the staff
iv. The radios in the rooms

Hi—IHHH
NNNMN
“030300“
hhbb-fi
0101010101

v. Babies crying
vi. Other (Please Specify)

c. SPATIAL CHARACTERISTICS

i. Crowded conditions 1
ii. Lack of Privacy 1
iii. Number of persons in the rooms 1

iv. Other (Please Specify)
(1. Please add in here if there was anything else about the NICU

environment that you felt added to your anxiety level. Use the back
of this paper, if necessary.

108

5.

Was there anything in the NICU environment that you found comforting or

reassuring?

What about your baby's appearance caused you the most concern initially?

Please circle the appropriate response.

DIDN'T CAUSED
CAUSE MUCH
CONCERN NEUTRAL CONCERN

a. The baby's size 1
b. The tubes and equipment on the baby 1

c. The baby's activity level (Too much
or too little) 1 2 3 4 5

d. Other (Please Specify)

In general, how would you describe the staff's ability to help decrease your

anxiety and make you feel more comfortable?

NOT AT ALL VERY

HELPFUL NEUTRAL HELPFUL
a. The neonatologists l 2 3 4 5
b. The nurses 1 2 3 4 5
c. The social workers 1 2 3 4 5
d. The residents 1 2 3 4 5

Regarding the information that you received about your infant's condition,
please circle the number by the statement(s) below that you feel apply.

a. It was presented in a way that I could understand.

b. It was not presented in a way that I could understand.

c. It was too pessimistic.

d. It was too optimistic.

e. It was often inconsistant due to different interpretations by the various

staff members.

109

10.

11.

Did your infant have nurses that routinely cared for him or her? YES NO

a. If yes, did you find this helpful? YES NO

b. Please comment on your answer.

Lastly, I would like to ask you a few questions regarding measures that you
may have found reassuring. These are somewhat listed in the order which
you might have experienced them. Please circle the appropriate response.

NOT AT ALL VERY
HELPFUL NEUTRAL HELPFUL

a. Seeing and touching your baby. 1 2 3 4 5
b. Having a picture of your baby. 1 2 3 4 5
c. Seeing your baby in clothes. 1 2 3 4 5
(1. Holding your baby. 1 2 3 4 5
e. Bringing in clothes, toys, pictures,

for the isolette, etc. 1 2 3 5
f. Talking with the staff. 1
g. Talking with other parents who had or

previously had an infant in the NICU l 2 3 4 5
h. Actually caring for your infant (feeding,

changing, etc.) 1
i. Rooming in. l 2
j. The discharge teaching. 1

Do you feel that any of the following would have been helpful? (Use the

same scale as above).

a. Having "veteran" parents visit you to

share their experiences. 1 2 3 4 5
b. Having weekly support meetings on the

unit. 1 2 3 4 5

110

NOT AT ALL VERY
HELPFUL NEUTRAL HELPFUL

c. Having slides, video tapes, and
better written material explaining the
problems of the ill newborn and his
family. 1 2

d. Being more involved in the baby's care. 1 2

12. What suggestions could you make that might help to make the situation
easier for other parents?

13. Do you have any further comments or suggestions?

Once again, thank you very much for your time and help in this project!

111

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