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The effects of a system of instruction and support on mothers of infants admitted to a neonatal intensive care unit

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Title:
The effects of a system of instruction and support on mothers of infants admitted to a neonatal intensive care unit
Creator:
Stone, Linda L., 1945-
Publication Date:
Language:
English
Physical Description:
xii, 171 leaves : ill. ; 28 cm.

Subjects

Subjects / Keywords:
Grants ( jstor )
Hospitalization ( jstor )
Hospitals ( jstor )
Infants ( jstor )
Mothers ( jstor )
Neonatal intensive care units ( jstor )
Neonates ( jstor )
Parents ( jstor )
Questionnaires ( jstor )
Sadness ( jstor )
Curriculum and Instruction thesis Ph. D
Dissertations, Academic -- Curriculum and Instruction -- UF
Mother and child ( lcsh )
Neonatal intensive care -- Psychological aspects ( lcsh )
Newborn infants -- Hospital care -- Psychological aspects ( lcsh )
Genre:
bibliography ( marcgt )
non-fiction ( marcgt )

Notes

Thesis:
Thesis (Ph. D.)--University of Florida, 1983.
Bibliography:
Bibliography: leaves 166-169.
General Note:
Typescript.
General Note:
Vita.
General Note:
UF copy defective. Leaf 148 out of sequence : it follows leaf 165.
Statement of Responsibility:
by Linda L. Stone.

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THE EFFECTS OF A SYSTEM OF INSTRUCTION
AND SUPPORT ON MOTHERS OF INFANTS
ADMITTED TO A NEONATAL INTENSIVE CARE UNIT










BY

LINDA L. STONE


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


UNIVERSITY OF FLORIDA


1983
































Copyright 1~983

by

Linda L. Stone





























To My Husband

Stephen

who never failed to encourage,
support, and love me throughout
this whole endeavor

and to our children, Ben and Jenny,
of whom we are both so proud
















ACKNOWLEDGMENTS


It has become apparent to me that there should not be only one name on the title page of a dissertation. It most certainly is a community effort.

The following friends made this goal possible.

Gregor Alexander, M.D., has made the quality of a baby's life his life's work and he always made me feel that I was an integral part of his babies' care.

Brian Lipman, M.D., is an excellent example of what a physician treating infants should be -- patient, kind, gentle and an excellent teacher.

Marge Brennan, B.S.N., a very caring friend, gave of herself in so many ways to insure this paper would be completed.

Loreen Francescani's friendship, intelligence and humor

helped me survive many obstacles when I was not sure I could.

Charlie Francescani stayed with me, and with me, and with me during a thousand pages of computer printout. He

helped me laugh at myself.

Special thanks must go to the following people.

Gordon Lawrence, Ph.D., Chairman of my dissertation

committee, unfailingly held my hand whenever I told him it


-iv-












needed holding. From the day we met, Dr. Lawrence made me feel I was someone special. His faith and intelligence have helped me attain a goal I never dreamed possible.

Charles Dziuban, Ph.D., has b1-een with me from the beginning, encouraging me to be independent.

Sheila Davis has been the key to completing my studies. Without ever making me feel it was an imposition, she has typed and corrected all of my papers, in spite of my terrible handwriting. I want her to know how much I

appreciate her.

Sherry Herring took over the chores of typing my dissertation without missing a beat. She never complained about correction, after correction, after correction. For

that, I will be eternally grateful.


















TABLE OF CONTENTS


PAGE


ACKNOWLEDGMENTS .... .. .. ..

LIST OF TABLES . . . .. .. .. . ABSTRACT...... .. . .. .. . . .


. . . . . . iv


. . . viii


. . . . . . . . xi


CHAPTER


I. INTRODUCTION TO THE STUDY..

Statement of the Problem.
Background of the Study
Purposes of the Study
Design of the Study
Scope of the Study ....
Treatment Plan . . ....

II. REVIEW OF THE LITERATURE ..


.. . . 1


*2
*4
*5
*6
*7


. . . . . . . . 12


Need for the Study . . . . . .. .. .. .... 12
The Effects of At-Risk Birth on
Infant Development . . . . ... . . . . . 13
Problems of Adjusting to High
Risk Infants . .. .. .. .... . . . . . 14
The Effect of Premature Birth on
Maternal Coping Skills . . . . . . . . . . 15
Mothers' Perceptions...... .. .. .. . . . . 17
The Need for Instruction and Support
for Mothers of High Risk Infants . 19

III. DESIGN OF THE STUDY. ......... . . . . . . 21

Sample and Procedure . . . .. .. .. .. ....22
Data Collection....................23
objective I - Parent Understanding
of Infant's Condition and Care . * 24
Objective II -Parent Coping Scale .... 25
Objective III -Neonatal Perception
Inventory and Degree of Bother
Inventory. ................26
objective IV - Parent Understanding
of Infant's Behavior and Needs . * 27


-vi.-









Method of Analysis......... .. .. .
Background Data..... .. .. . . .
objectives . . ..........
Limitations .... .. .. ......

IV\. RESULTS.................


Background Data . . . . . . ......
Entire Sample of Mothers in Study..
Background Data by Weight .....
Background Data by Grant ......
objectives ... .. .. .. .. .. . ..
objective I - Parent Understanding
of Infant's Condition and Care
objective II - Parent Coping Scale
(Part A)..... .. . . . . ...
Objective II - Parent Coping Scale
(Part B) .......... . *
Objective III - Neonatal Perception
Inventory (NPI) . . . . . ....
Objective IV - Parent Understanding
of the Infant's Behavior and Needs

V. DISCUSSION . . . . . . . . . . . . ....

Background Data . . . . . . . . ....
objective I - Parent Understanding of
the Infant's Condition and Care...
Objective II - Parent Coping Scale
(Part A and Part B)..... .. .. .. .
Objective III - Neonatal Perception
Inventory (NPI) . . . . . . . ....
objective IV - Parent Understanding of
the Infant's Behavior and Needs...
Conclusions and Implications . . ....
Recommendations for Project Improvement
Limitations * *..*....*.
Recommendations for Further Research
Summary . .. .. ... .... . ....

APPENDIX A SUPPLEMENTARY TABLES .*

APPENDIX B STUDY INSTRUMENTS . . . . . ....

APPENDIX C SAMPLES OF MATERIAL
IN THE ADMISSION PACKET ...........

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

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


. . o 44 . . . 44 . . . 45 . . . 52 . . o 56 . . . 56

* . . 60 * . . 76 * . . 84 . . . 92 o . . 97 . . . 97


100

102 111

112 114 120 122 122 124 127 136


148 166


. . . 170


-vii-


28 28 30 39

44


















LIST OF TABLES


Pag e


Table


TABLE 3-1 TABLE 4-1 TABLE 4-2 TABLE 4-3 TABLE 4-4 TABLE 4-5 TABLE 4-6 TABLE 4-7 TABLE 4-8 TABLE 4-9 TABLE 4-10


Summary of Design and Analysis Procedures..................

Background Variables of Mothers With Infants Weighing < 1500 Grams and > 1500 Grams. ...... . . . .*

Significant Differences Between Mothers of Infants Weighing < 1500 Grams and < 1500 Grams....... . .. .... .

Background Variables of Infants in Each Weight Category . . . . . . . ....

Significant Differences Between Infants Weighing < 1500 Grams and > 1500 Grams

Background Variables of Mothers Whose Infants Did and Did Not Qualify for the CMS Grant .. .. .. .. .. .. . .

Significant Differences Between Mothers Whose Infants Did and Did Not Qualify for the CMS Grant . . . . . . .. .. ..

Background Variables of Infants Who Did and Did Not Qualify for the
CMS Grant . . . . . .... .. .. .. . .

Parent Understanding of Infant's Condition and Care--Results of objective I for the Entire Sample .........

Objective I--Areas Mostly Highly Rated by Each Subgroup.......... .. .. .. ..

Objective I--Areas Least Highly Rated by Each Subgroup.......... .. .. .. ..


-Viii -


41 46 48 49 50 53



54 55 58 61 62












TABLE 4-li TABLE 4-12 TABLE 4-13 TABLE 4-14 TABLE 4-15: TABLE 4-16: TABLE 4-17 TABLE 4-18 TABLE 4-19 TABLE 4-20 TABLE 4-21 TABLE 4-22


Parent Understanding of the Infant's Condition and Care--Objective I Significant Differences Between Mothers Whose Infants Did and Did Not Qualify for the CMS Grant ......

Parent Coping Scale (Part A)--Results of Objective IIA for the Entire Sample ...

Parent Coping Scale (Part A)--Results of Objective IIA for the Entire Sample...

Parent Coping Scale (Part A)--Objective IIA Significnt Differences Between Pre and Post Evaluations for the Entire
Sample ..... .. .. . . . . . . . .

Parent Coping Scale (Part A)--Results of Objective hIA Comparing Mothers With Infants in Each Weight Group . . . ....

Parent Coping Scale (Part A)--Objective IIA Significant Differences Within Weight Groups from Pre to Post
Evaluation . . . ... .. .. .. .. . ..

Parent Coping Scale (Part A)--Results of Objective IIA Comparing Mothers With Infants in the No Grant and Grant
Groups . . . . . . . . . . . . . . . . . .

Parent Coping Scale (Part A)--Objective IIA Significant Differences Between No Grant and Grant Groups ... .. .. .. ..

Parent Coping Scale (Part A)--Qbjective II Significant Differences Within the No Grant and Grant Groups from Pre to Post Evaluation .............

Parent Coping Scale (Part B)--Helpfulness of Staff With Coping--Results of Objective IIB for the Entire Sample ........

Parent Coping Scale (Part B)--Helpfulness of Staff with Coping--Results of Objective IIB for Each Subgroup ..........

Parent Coping Scale (Part B)--Helpfulness of Staff with Coping--Results of Objective IIB by Subgroup . . . ... .. .. .. ..


- ix-


63 65 66 68 69 71


73


75


77


79 82 85











TABLE 4-23 TABLE 4-24 TABLE 4-25 TABLE 4-26 TABLE A-1 TABLE A-2 TABLE A-3 TABLE A-4 TABLE A-S TABLE A-6


Parent Coping Scale (Part B)--Helpfulness of Staff with Coping--Objective II Significant Differences Between No Grant and Grant Groups. ...........

Neonatal Perception Inventory--Results of Objective III for the Entire Sample

Parent Understanding of Infant Behavior and Needs--Results of objective IV for the Entire Sample . . . .. .. .. ..


Parent Understanding of Infant Behavior and Needs--Objective IV Significant Diferences Between Pre and Post Test

Background Data--Entire Sample-Mothers. ....... .. .. .. ..

Background Data--Entire Sample-Infants . . .... .. .. .. .. . .

Parent Understanding of Infant's Condition and Care--Results of objective I for Entire Sample of
30 Mothers . . . . . . . . . . . . . .

Parent Coping Scale (Part A)--Results of objective IIA for Entire Sample

Parent Coping Scale (Part B) Helpfulness of Staff with CopingResults of Objective IIB for Entire Sample .. ....... . . . . . .*

Objective IV--Parent Understanding of Infant Behavior and Needs Test Item Analysis . . . . . . . ...


87 91 95 96


128 129 130 131 133 135

















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

THE EFFECTS OF A SYSTEM OF INSTRUCTION
AND SUPPORT ON MOTHERS OF INFANTS
ADMITTED TO A NEONATAL INTENSIVE CARE UNIT By

LINDA L. STONE

December, 1983

Chairman: Gordon Lawrence Major Department: Curriculum and Instruction

The purpose of this study was to evaluate and document

the effectiveness of a system of instruction and support developed for mothers of Neonatal Intensive Care Unit infants. An additional purpose of this study was to look at the relationship between an infant's birthweight, the family's financial status, and the mother's need for intervention.

The effects of the system were measured by changes in the following areas: 1.) a mother's understanding of her infant's condition and care; 2) a mother's ability to cope with the crisis of the birth of an at-risk infant; 3) a mother's attachment to her infant judged by her perception of that infant; and 4) a mother's understanding of newborn


-xi-








and premature behavior and needs. Maternal change was

documented in these four areas between the time the infant was admitted and one month post-discharge. The sample

consisted of thirty mothers of infants admitted to Orlando Regional Medical Center's Neonatal Intensive Care Unit.

Overall satisfaction with the services provided was demonstrated, with the greatest satisfaction apparent at admission. Some areas requiring attention became apparent, including the need for improved discharge procedures and providing information about hospital and community services.

The overall sample of mothers displayed certain persistent coping problems (grief reactions). These included 1) feeling a need to pray for the baby; 2) money worries; 3)

fear the baby might die; 4) sadness; 5) not believing what was happening (shock). Some grief reactions increased significantly, in spite of adequate staff support.

Differences in reactions were documented between

mothers of infants in the two weight categories and also between Grant and No Grant mothers. The staff was judged to

be effective in meeting some of the special needs of each subgroup and ineffective in meeting others.

The staff was quite effective in helping the entire sample of mothers maintain a positive attitude toward their infants and may have been instrumental in increasing the entire sample's awareness of infant behavior and needs.

However, this last finding needs to be further substantiated.


-Xii-
















CHAPTER I
INTRODUCTION TO THE STUDY


Statement of the Problem

The purpose of this study was to evaluate the effects of a system of instruction and support offered to mothers of

high risk infants who had been admitted to the Neonatal Intensive Care Unit at Orlando Regional Medical Center (ORMC).

A system of instruction and support had been in place at ORMC since 1979. Until now, there had been no attempt to

delineate the individual components of this system, nor had there been an attempt to document the efficacy of the system as a whole or its individual components.

The field of early intervention with high risk infants and their families is relatively new. The f ield of neonatalogy (medicine as it relates to infants in the first twenty-eight days of life) is only about fifteen years old.

Therefore, programs such as the one offered at ORMC are few in number and the evaluations of such programs even fewer. This study attempted to evaluate one such program. The

evaluation looked at each of four program objectives

(components) and also tried to discern if the program had


-1-







-2-


varying effects on the mothers, depending on the birthweight of their infants and whether or not the family qualified for a grant covering the infant's hospital expenses.

Background of the Study

In July, 1979, the United States Department of

Education awarded Orange County Public Schools, in cooperation with Orlando Regional Medical Center, a three-year demonstration grant. The ultimate goal of the project was to develop a model of early intervention for at risk infants and their parents. Studies which had been conducted until that time indicated that very early intervention with both these infants and their parents might help minimize the need for institutionalization or long-term special education.

Infants born at risk were found to have a higher incidence of cognitive, affective, and motor difficulties.

The intent of the project was to develop a model which had two components: (1) an in-hospital component which

addressed the psychoeducational needs of both the parents of

infants and infants who had been admitted to the Neonatal Intensive Care Unit at Orlando Regional medical Center

(ORMC), and (2) an at-home component which addressed the needs of those infants considered to be at highest risk for a potential handicap because they met specific criteria.







-3-


A model demonstration project must have an evaluation of its services. Through this evaluation, other agencies can make informed decisions regarding whether or not to

adopt all or part of the project model. The evaluation

should contribute to the existing body of literature on how effective early intervention is with infants who have been admitted to a regional neonatal intensive care unit.

ECHO-Parent/Infant Education (ECHO-PIE) Project staff and Gregor Alexander, M.D., Director of Newborn Services, established criteria for designating which infants admitted to the Neonatal Intensive Care Unit (NICU) were to be considered at risk for a possible handicapping condition for

the purposes of the project. The rationale for selecting these critera was based upon studies conducted by Apgar and James (1962), Mary Drillien (1959, 1961, 1964), and others,

as well as on Dr. Alexander's experience with discharged infants who had been followed in the hospital's Children's Medical Services Neonatal Follow-Up Clinic.

once selection criteria were established, the project staff designated an evaluation to measure change in those infants identified as being at risk for a possible handicapping condition who had received project services.

The evaluation design allowed thirty infants--who met the selection criteria, whose parents agreed to receive

project services and who resided in Orange County--to be







-4-


designated the experimental group. Thirty infants meeting

the selection criteria, who did not live in Orange County and who received only in-hospital project services and not at-home services, were designated the comparison group. This design measured only the effects of the at-home

component of the project model, these effects being in the form of child change only. Still to be looked at was the in-hospital component with its attendant parent change.

The grant period for the ECHO-PIE project expired June 30, 1982. Beginning July 1, 1982, the Developmental Services Division of the State of Florida's Health and Rehabilitative Services funded four grants for model

development in the State. The purpose of these grants was to develop a local model of very early developmental

intervention for infants admitted to a Regional Perinatal Intensive Care Center. Orlando Regional Medical Center

received one of these grants. This grant, in essence,

allowed the hospital staff to further refine the model

initiated by the ECHO-PIE project. This new project was

called Neonatal Parent/Infant Education (NEO-PIE). With the advent of this grant, it was possible to evaluate the efficacy of the in-hospital component and to document parent change in addition to child change.

Purposes of the Study

This study attempted to evaluate a model of instruction and support developed for mothers of infants admitted to the







-5-


Neonatal Intensive Care Unit at Orlando Regional Medical Center. The components of this model were developed in an attempt to address the multiple needs these mothers have in coping with the birth of a high risk infant.

Design of the Study

The effects of a model of instruction and support designed for mothers of infants admitted to a Neonatal Intensive Care Unit were evaluated on four groups of mothers

of high risk infants. One group of mothers had infants

weighing < 1500 grams. This group of mothers was compared with a group of mothers whose infants weighed > 1500 grams. Mothers of infants who qualified for a grant paying the cost of the baby's hospitalization were compared with mothers

whose infants did not qualify. The effects of the model

were also evaluated on the entire sample of mothers.

For the infants to have been eligible for the study, they must have met one or more of the following medical criteria: a birth weight of < 1500 grams; clinical signs of birth asphyxia; an intraventricular hemorrhage; a congenital anomoly with a non-fatal outcome; physician referral.

Mothers whose infants met these criteria were asked to voluntarily participate in this study. As soon as possible after an infant was admitted to intensive care and when the

mother's medical condition permitted, she was asked to fill out the pre-evaluation packet. Those mothers were then








-6-


asked to fill out a post-evaluation packet one month after the baby was discharged. Data were collected on thirty

mothers.

There were design and analysis issues attendant to

evaluating a program in a field setting, especially this program. Perhaps the largest issue was that of establishing a control or comparison group. Since intervention with

mothers and infants had been available for the past three years, it would have been difficult to withhold these services from a portion of this group to establish a control. Additionally, the availability of these services appeared to

have modified the attitudes and behavior of the NICU staff toward early intervention. Therefore, even if' a comparison

group could have been ethically established, some form of instruction and support would have been available to these mothers from the medical staff.

Scope of the Study

The goals of this evaluation were (1) to assess the effect of each objective of the intervention model on the entire group of mothers; (2) to ascertain if a mother's intervention needs were different, depending on the birthweight of her infant; and (3) to ascertain if a moderator variable, eligibility for the Children's Medical Services (CMS) Perinatal Grant, had an effect on the mother's need for intervention. This moderator variable was used to







-7-


ascertain whether the intervention needs of the group of mothers whose infants were on the CMS Perinatal Grant were different from the needs of those whose infants were not.

Treatment Plan

Parent instruction and support began at Orlando

Regional Medical Center in the individual hospital rooms while the mothers were patients. In the case of the infants who were transferred to ORMC, parents were contacted as soon as possible, either by phone or through the mail. Thereafter, personal contact was effected as soon as possible.

The model of instruction and support included

1. The education of parents concerning what

was happening to their infant in the NICU.

This was initiated through personal contact

by the parent counselor with each parent.

When the infant was admitted, the parent counselor provided the family with (1) a picture of the infant; (2) a packet containing information appropriate to their infants' gestational age; (3) a brochure on

neonatal intensive care; (4) a letter of introduction to the services of the parent counselor; (5) a selected bibliography; (6) instructions regarding visiting and phoning; and (7) instructions on how to







-8-


reach the parent counselor day or night.

Examples of some of the admission materials

are included in Appendix C. During this

initial meeting, the parents' immediate

concerns were addressed. The anticipated

results were to reduce parents' anxiety,

enable them to ask better questions about their infants' condition, encourage immediate and continued visitation, and establish a relationship between the parent

counselor and the parent(s).

2. The provision of individual and/or family

counseling to encourage parents to move

through the "grieving process" alluded to in much of the literature on parents of at risk or handicapped children. Parents were referred for counseling to the parent counselor either by the hospital medical

staff or social service staff, or through self-referral. The counseling approach was that of crisis intervention and included a

description by the counselor of the causes of at-risk birth. Frequent visits by the parent to the NICU were encouraged to foster a realistic appraisal of the child's







-9

condition and prognosis through questions to medical staff and project staff.

Referrals to appropriate community mental health agencies were made when client

problems were deemed beyond the scope of

the parent counselor.

3. The encouragement of mother-infant bonding

and family-infant attachments. Relevant information was made available with respect to what might facilitate bonding and attachment in the NICU environment. Infant behaviors and responses were sometimes explored through Brazelton Neonatal Behavioral Assessment Scale type assessments (Brazelton, 1973a) administered to the infant periodically with the mother present. Once infant responses were

documented, suggestions were made to

parents on how to facilitate attachment.

4. The provision of instruction to parents on

in-hospital interventions, once the infant's condition permitted. The content of this instruction was covered by members of the NICU staff that is comprised of physicians, nurses, respiratory therapists, occupational therapists, a parent counselor







-10-


and two infant educators. The instruction was based primarily on the constructs inherent in the Brazelton Neonatal Behavioral Assessment Scale. Interventions included improving the visual, auditory, tactile and kinesthetic environment for the

infant to encourage more normal growth and development and to help minimize the effects of prolonged hospitalization.

Examples of intervention plans and logs are

included in Appendix C.

5. The provision of discharge teaching, the

goal of which was to facilitate a smooth transition from the hospital to the home environment for both the mother and the

infant.

6. Instruction for parents about the services

available for themselves and their infants

in their home community.

7. The provision of post-discharge home visits

for those infants who met NEO-PIE criteria and who were determined to be developmentally at risk by their doctor. These

visits were made by one of the two parent!

infant educators who were introduced to







-11-


that family while the infant was hospitalized. These visits were made at

approximately one week post-discharge and weekly thereafter until the infant was at least six months adjusted age (corrected for prematurity).

The purpose of these visits was to aid the family in providing an environment which

would maximize the infant's developmental potential and to help insure that the

family and the infant had made a satisfactory adjustment in all areas.

















CHAPTER II
REVIEW OF THE LITERATURE


Need for the Stud~y

The need for early intervention seems to have been established according to the literature. However, the worth

of specific types is still being questioned. Among those

types of early intervention programs still in their infancy are instruction and support for mothers of infants admitted to a neonatal intensive care unit. Since the art of

neonatal interventions is relatively new and since the NICU at ORMC had already established a model of intervention which was being refined, it was proposed that a descriptive study of this type of intervention would serve to add to the body of knowledge. Once the program variables were

described and changes in maternal knowledge, coping skills, and perceptions of their infants were documented, several possibilities could result: the program itself could be

improved; others could either choose to implement or reject all or part of the model based upon this documentation; and true or quasi-experimental designs could be generated from one or more of the variables described.


-12-







-13-


The Effects of At-Risk
Birth on Infant Development

Over the past twenty years there has been an effort by researchers to study the elements in infant-caregiver

interaction and to understand how the relationship between the caregiver and the infant affects later child development. These studies have shown that early interaction

between parent and infant affects the skill development of the child both immediately and in later life (Yarrow, 1964; Lewis & Goldberg, 1969; Ainsworth & Bell, 1973; Stern, 1974; and Rubenstein & Pederson, 1972).

A study by Martin (1978) showed the premature infant to

be less responsive when compared to a full-term infant at the newborn period when matched for conceptual age. Another study at the University of Washington (Barnard, 1979) showed that the preterm infant at one and four months of age

(corrected) is less alert and responsive than his full-term counterpart. In this same study, observation of parenting behaviors showed that, at one and four months, there were no differences in the preterm and term mothers' involvement and

responsiveness with the child. However, by eight months,

the parents of the premature infant were less responsive to their infants' cues, whereas by this time, the preterm and term infants were showing no differences in responsiveness to their environment.







-14-


Cognitive and affective development of normal versus preterm infants has also been investigated by researchers. A study through middle childhood suggests that, although children born prematurely have normal IQ scores, their

scores are within the lower end of the normal distribution (Caputo, Goldstein, & Taub, 1979). Studies of preterm infants by Field (1977) and Sigman and Parmelee (1977) have

reported difficult early mother-infant interactions as well as correlations between these difficult early relationships and later deficits in cognitive performance.

A study by Klaus, Jerauld, Kreger, McAlpine, Steffa and

Kennell (1972) showed that mothers who were encouraged to have extended physical contact with their infants

immediately following the birth of their normal full-term infants were more reluctant to leave their infants with someone else, usually stood and watched during examinations, showed greater soothing behavior, and engaged in significantly more eye-to-eye contact and fondling. This

study showed that simple modification of care shortly after delivery may alter subsequent internal behavior for the

mother and improve the emotional outlook for the infant. The applicability of this research to at-risk infants was shown in subsequent studies by Klaus and Kennel (1970).

Problems of Adjusting to High Risk Infants

Pamela Grant (1978), when discussing the many psychosocial needs of families of high risk infants, has stated:








-15-


"Many parents of newborns requiring intensive care report a

variety of emotional difficulties which may interfere with

their relationship with the infant and disrupt the family's

functioning" (p. 92). The manner in which parents work with

their feelings and undertake these tasks, Grant continues,

will, to some degree, determine a healthy or unhealthy outcome for the child and the family:

.early events along with the subsequent
decision to transfer an infant to a regional medical center initiate parents into a
crisis period.

Throughout this period, the individual
parents struggle to understand the events they encounter. Each individual's and
family's repertoire of life experiences is called upon as they attempt to make sense of what they are undergoing. The family's perception of the event . . . is critical to their ability to realistically perceive
their child's medical condition. (p. 92)

It is exceedingly difficult for parents experiencing these complex emotions to objectively integrate medical information in
understanding their infant's condition and
needs. If parents have not reached ...
mastery, a distorted view of the child's
condition and needs may be evidenced in the
parental relationship. (p. 94)

Communication within the health care system is critical to the family's perception of their infant's medical status and needs.
Communication must support the attachment process by emphasizing the humanness and
individuality of the infant. (p. 94)

The Effect of Premature Birth on Maternal Coping Skills

In research often cited in the literature, Caplan,

Mason and Kaplan (1965) identified four tasks a mother of a








-16-


premature infant must face. First, the mother must prepare for possible loss (anticipatory grief). Second, she must

acknowledge and face maternal failure to deliver a full-term infant. Third, she must resume the process of relating to the infant. Fourth, she must learn how a premature infant differs from a full-term infant and understand his/her special needs.

The abnormal separation of the mother from the infant has been shown to affect the mother's ability to attach to her infant. Denial of early mother-infant interaction can have a negative effect on maternal self-confidence,

resulting in later disorders of mothering. These include

child battering and maternal influence on failure-to-thrive syndrome (Farnaroff & Kennel, 1972; Seashore, Leifer, Barnett & Leiderman, 1973).

Leonard, Rhymes and Solnit (1966) found a relationship between failure-to-thrive syndrome and emotional deprivation in very young children. Marked deficiencies appeared in the

mother-infant dyad. These mothers expressed feelings of

inadequacy and appeared incompetent in terms of dealing with the feeding and other activities of their infants. The

researchers also observed that developmental characteristics of the infants may also have contributed to the mother-child difficulties. "Thus each infant and mother contributed reciprocally to the other's failure to thrive as well as the faulty relationship between them" (p. 609).










Mothers' Perceptions

Researchers have found that the early perceptions of a mother toward her infant can set the stage for future relationships by serving as a framework for the beginning of positive nurturing interactions or for the start of inappropriate and conflictual interpersonal interactions (Erikson, 1976). Newborn infants with problems severe enough to

warrant admission to an intensive care unit are likely to be

perceived by their mothers as deficient or below average; hence, their risks may be amplified by their mothers' negative perceptions of them. Neonatal intensive care units

typically have not emphasized instruction and support for their mothers (Klaus & Kennel, 1970). The need for early

detection of and attention to potential problems of infants before or at the beginning of their development has been recognized (Broussard & Hartner, 1971). However, this need for instruction of their mothers is less well recognized.

From her years of experience in observing mothers and children, Elsie Broussard developed a conviction that is supported by a steadily growing body of empirical evidence. This conviction is that infants who are not perceived by their mothers as being better than average are at a much higher risk for subsequent emotional difficulty than infants who are viewed as better than average.







-18-


Broussard also held the view that, for a short period of time after the birth of an infant, the development of optimal mother interactions is vulnerable because of the lasting influence the mother's initial perceptions have on her subsequent parenting of her child. This viewpoint is

shared by Klaus and Kennel (1970). As early as birth, an

acquaintance process between a mother and her infant begins. This process of acquaintance forms the basis of subsequent interpersonal behaviors between mother and child. The ways that the mother interacts with her infant will be influenced by her perception of the infant's

appearance and behaviors. The infant's behavior will then be influenced by the way the mother interacts and handles the infant (Broussard, E. R. Personal Communication to Marcene Erikson, February, 1976).

In Broussard's research, when developing her Neonatal Perception Inventory, she found that mothers who perceived their one-month-old infants as better than average tended to have better self-esteem. Those mothers with a poorer selfesteem tended not to view their infants or their infants' health as better than average, although no differences existed between the groups with regard to the reported actual illnesses. The low self-esteem mothers also tended to lack the little bit of enthusiasm needed to rate their own health as being excellent (Broussard & Hartner, 1971).








-19-


Finally, Broussard's research on her Neonatal Perception Inventory found a significant correlation between the mother's perception of her infant as measured by the

Neonatal Perception Inventory at one month and the need for therapeutic intervention at age 4-1/2. Of infants rated by

mothers at one month as below average, 66% needed intervention by age 4-1/2 as compared to 20.4% needing intervention in the average or above average group.

The Need for Instruction and
Support for Mothers of High Risk Infants

The studies reviewed thus far and other studies (Moss & Kagan, 1958; Scarr-Salapatek & Williams, 1973; Powell, 1974) indicate the crucial importance of parent involvement with any infant, but especially the high risk infant. The

goal of intervention with high risk infants should be to improve the mother's self-concept and confidence and to facilitate immediate and on-going mother-infant interaction, thereby improving maternal perceptions 'of the infant. Through interventions with these goals in mind, the developmental outlook of the high risk infant should be significantly improved.

Studies on early intervention in neonatal intensive

care units have largely been focused on multisensory stimulation with the infants themselves. These studies have had conflicting results.

Generally, each of the studies on intervention with

mothers has focused separately on one or another of three







-20-


aspects of maternal support: reducing mothers' separation

from their at-risk infants (Barnett, Leiderman, Grobstein & Klaus, 1970; Klaus & Kennel, 1970); helping parents to cope with the birth of an at-risk infant (Waisbren, 1980); providing demonstrations of preterm infant or at-risk infant behaviors (Widmayer & Field, 1981). There has yet to be a study which documents the changing needs that mothers have for support and instruction during the entire time their infants are patients in a neonatal intensive care unit.
















CHAPTER III
DESIGN OF THE STrUDY


The NEO-PIE model for instruction and support was

conceived as an attempt to help mothers meet four objectives. The designation of these objectives resulted from a review of the literature. Each objective represented a

milestone that studies in the literature cite as important for the mother of an at-risk infant to obtain to begin to be an effective parent. The effects of early instruction and support were measured by changes in (1) a mother's understanding of her infant's condition and care; (2) a mother's ability to cope with the crisis of the birth of an at-risk infant; (3) a mother's attachment to her infant judged by her perception of that infant; and (4) a mother's understanding of newborn and premature behavior and needs. The

effectiveness of the model was documented by looking at maternal change in these four areas between the time the infant was admitted to the ORMC-NICU and one month postdischarge. The mothers included in the intervention group represented a cross-section of the types of mothers normally encountered in an NICU.


-21-







-22-


In addition to the main purposes of measuring the effectiveness of the model of instruction and support

established by the NEO-PIE model, this study also generated data on the relationship between the infant's birthweight, the family's financial status, and the mother's need for intervention.

Sample and Procedure

All mothers whose infants met the NEO-PIE criteria and who agreed to be a part of this study responded to the instruments. The study commenced as soon as possible after the NEO-PIE staff began accepting clients and terminated

when pre- and post-evaluation data were collected on thirty subjects.

The mother was asked to fill out the initial questionnaires as soon as her medical condition permitted. An

interviewer was provided for those mothers who did not understand the task. The person interviewing was not one of the NEO-PIE staff.

All of the pre-evaluation instruments were administered at this time. The answer sheets were coded to insure that the NEO-PIE staff were blind to the results, as well as to protect the confidentiality of the mothers.

At one month post-discharge, the post-discharge

questionnaires were sent to those mothers who submitted pre-evaluation questionnaires. Help was again offered







-23-


to those mothers who did not understand the task. Each

answer sheet was again coded with the same code as the initial answer sheet.

Demographic and medical information on the mother and infant was collected over the life of the study. The

mother's visits and calls were also documented as an additional assessment of the mother's attachment to her infant.

Data Collection

Four questionnaires were used in this study. Three of

these questionnaires were designed for the purposes of this study as no satisfactory ones were available in the literature. The questionnaires covering Parent Understanding of Infant Condition and Care, Parent Coping Skills, and Parent Understanding of Newborn and Premature Behavior and Needs were original to this study. The fourth questionnaire,

which covered Mother's Perceptions of Her Infant, was the Broussard Neonatal Perception Inventory (Broussard & Hartner, 1971). The Neonatal Perception Inventory (NPI) had

been used in numerous other studies to document maternalinfant attachment.

The instruments original to this study were constructed using test mapping. For each objective to be measured,

specific knowledge needed to be gained to complete that








-24-


objective was defined. The definition of these areas was gleaned from the literature, and a standard was designated for each objective: what would be important for the mother

to understand about her child's development to be a competent parent? Once the areas of knowledge were defined, questions were generated. To insure objectivity and ease of

scoring, true/false questions were chosen for the questionnaire measuring increases in understanding of an infant's behavior and needs.

The questionnaires were given to five people for review. Three of these people were professionals in the area of perinatal care. They reviewed the instruments for content validity. The other two people asked to review these instruments were mothers of at-risk infants. They

were asked to comment on the readability and relevance of the questionnaires.

Objective I: Parent Understanding of the Infant's Condition
and Care
The questionnaire on Parent Understanding of Infant Condition and Care (Page 137 in the Appendix) was designed to document whether changes in mother's knowledge between the time the infant was admitted and one month postdischarge came about as a result of staff intervention.

A questionnaire using Likert-type responses

administered at one month post-discharge only was selected







-25

as the most effective way to measure whether changes in a mother's understanding of her infant's condition and care came about as a result of hospital services. A preevaluation would serve no purpose. What was being measured with this instrument was how helpful the mother thought the hospital staff was in increasing her understanding. It was

felt this objective could only be measured retrospectively. Objective II: Parent Coping Scale

Questions for the Parent Coping Scale were adaptations of questions used in the Benfield-Leib Father-Mother Discharge Questionnaire (Benfield & Leib, 1974) used at the Children's Hospital of Akron, Ohio. Permission to adapt

this scale was secured from Dr. Benfield. The Benfield-Lieb Questionnaire reflects the grieving process parents go

through when they give birth to a premature or sick infant. The pre-evaluation questions (Part "A") were designed to look at how the mother was coping at the time the baby was admitted. The mother was again asked to answer the "A" questions at one month post-discharge to ascertain if there were any changes in the way she coped between the time the baby was admitted and discharged. In addition, on the

post-evaluation, a second part (Part "B") asked the mother to evaluate how helpful she found the NICU staff to be in the areas where she was having difficulty. The term "NICU

staff" was used because it was difficult for parents to








-26-


separate medical staff from intervention staff and often

their functions overlapped. Answers for the questions on this instrument were placed on a Likert-type scale to make scoring and analysis relatively simple.

The initial administration of the Parent Coping Scale provided baseline data on how the mother was coping with the crisis of a sick infant. The one month post-discharge

administration of the questionnaire documented whether changes in the mother's coping took place between the infant's admission and discharge and whether the mother felt that staff intervention helped her to better cope. Reliability for Part "A" of this scale was determined using Coefficient Alpha.

Objective III: Neonatal Perception Inventory and Degree of Bother Inventory

The already existing Neonatal Perception Inventory was used to document changes in the mother's perception of her infant over time. Permission to use this instrument was requested from Dr. Broussard. This instrument had the

mother initially rate how she expected her infant to function in relation to an average baby and later rate how she thought her baby was functioning in relation to the

average baby. The first and second forms of this instrument

varied in that the first form asked the mother to make a prediction regarding how she expected her baby to be in relation to an average baby, and the second form asked how







-27-


the mother thought her baby rated in relation to the average baby after she had had the baby home for one month. The

second form also contained a Degree of Bother Inventory which asked the mother to assess how much bother her infant was in five areas and provided room for mothers to report other kinds of bother. In essence, this instrument was used as an indicator of early signs of the mother's attachment to

her infant, which is so important to the child's maximum development.

Objective IV: Parent Understanding of Infant's Behavior and Needs

The instrument measuring Parent Understanding of Infant Behavior and Needs was designed to document the changes in a

mother's awareness as a result of instruction provided by the project staff between admission and one month postdischarge.

Questions for this instrument were based on the concepts inherent in the Brazelton Neonatal Behavioral Assessment Scale (Brazelton, 1973a). The staff's developmental intervention philosophy is based on Brazelton's perspective. The questions were true/false in nature, and the same questions were used in both the pre- and postevaluations. Kuder-Richardson Formula 20 was used to

demonstrate the reliability of this instrument.

All of the questionnaires original to this study are included in the Appendix. The Neonatal Perception Inventory








-28-


and the Benfield-Leib Father-Mother Discharge Questionnaire are available from the authors.

Method of Analysis

This study attempted to document the effectiveness of a program which had been instituted in a field setting. The

nature of the task dictated that the results of the analysis be reported descriptively.

Several aspects of this program were considered and reported in addition to the overall effectiveness of the program model. Each hypothesis was tested at the 0.05 level of confidence. The information which has been described and the questions which were addressed are as follows. Background Data

The range in background of the entire sample of mothers

has been described in terms of variables listed on Table 3-1. The range in background of mothers whose infants fell into the < 1500 gram group has also been described

separately from that of the mothers whose infants fell into the > 1500 gram category. These two groups of mothers were compared, using one Way Analysis of Variance and Chi Square Contingency Tests, to see if a significant difference

existed in the various background variables between these two groups of mothers.

Hypothesis I: There will be no

significant difference in background







-29-


variables between mothers of infants weighing < 1500 grams and mothers of

infants weighing > 1500 grams.

The background of the entire sample of infants has also

been displayed according to the variables listed on Table 3-1. The variable ranges for each group of infants, < 1500 grams and > 1500 grams, were described and then compared. Even though Hypothesis III was stated in the null for

statistical purposes, it was expected that there would be a significant difference between these two groups on most of the variables. one Way Analysis of Variance was used.

Hypothesis II: There will be no

significant difference in background variables between infants weighing

< 1500 grams and infants weighing

> 1500 grams.

The range of background variables was also analyzed to ascertain if mothers who qualified for the CMS Perinatal Grant, which underwrote the baby's hospital costs, differed significantly from mothers who did not qualify. One Way

Analysis of Variance was used.

Hypothesis III: There will be no

significant difference in background variables between mothers whose







-30-


infants qualify for the CMS Peninatal Grant and mothers whose

infants do not.

The background variables of infants who were under the Perinatal Grant were compared to the background of infants not under the Grant, using One Way Analysis of Variance.

Hypothesis IV: There will be no

significant difference in background variables between infants whose

medical expenses are covered by the CMS Perinatal Grant and infants

whose expenses are not covered. objectives

The effectiveness of the efforts toward each intervention objective was analyzed three different ways: (1) by describing the effectiveness of the intervention efforts on the entire sample; (2) by ascertaining if the intervention effects differed, according to the size of the infant; and

(3) by ascertaining if the intervention efforts differed based on whether or not the family qualified for the CMS Perinatal Grant.

Objective I: Parent Understanding of Infant's

Condition and Care An item by item analysis of the questionnaire was conducted using the entire sample's

responses to evaluate the areas where NICU staff was most effective in helping the mother understand her infant's








-31-


condition and care. The mean responses for each item are reported.

Objective I data were also analyzed item by item to ascertain if a difference in intervention effects existed between mothers of infants weighing _S 1500 grams and mothers

of infants weighing > 1500 grams. Differential effects of

intervention were also analyzed on the Grant vs. No Grant mothers. Chi Square Contingency Tests were used in both comparisons.

Hypothesis V: There will be no

significant difference in intervention effects between mothers of

infants weighing < 1500 grams and mothers of infants weighing > 1500 grams in the mother's understanding

of the infant's condition and care.

Hypothesis VI: There will be no

significant difference in intervention effects between Grant and No Grant mothers in the mother's

understanding of infant's condition

and care.

Objective II: Parent Coping Scale (Part A)

Changes between the pre- and post-evaluation

responses were analyzed on an item by item basis for the








-32

entire sample. The question addressed was, "Does coping change across the time the infant is hospitalized?" The

mean difference from pre- to post- for each item is displayed.

Another question asked was whether mothers of infants weighing < 1500 grams coped differently during their

infant's hospitalization than mothers of infants weighing > 1500 grams. The same question was posed about mothers who

qualified for the CMS Perinatal Grant vs. mothers who did not. One Way Analysis of Variance and T-tests for Related Samples were used.

Hypothesis VII: There will be no

significant changes in coping during the infant's hospitalization between mothers whose infants are in the < 1500 gram group and the > 1500

gram group.

Hypothesis VIII: There will be no

significant changes in coping during the infant's hospitalization between

mothers whose infants are in the No Grant group and mothers whose

infants are in the Grant group.








-33

Objective II: Parent Coping Scale (Part B)

How helpful the entire sample perceived the NICU staf f to be with each aspect of coping was analyzed on an item by item basis. The mean responses for each item are displayed.

Item by item responses from the mothers of infants in each weight category as well as those in the Grant vs. No Grant category were compared to see if significant

differences existed in perceptions of the helpfulness of staff. Descriptive statistics and Chi Square Contingency Tests were used for each comparison.

Hypothesis IX: There will be no

significant difference between

mothers of infants weighing < 1500 grams and mothers of infants weighing > 1500 grams in mother's perception of helpfulness of staff

with coping.

Hypothesis X: There will be no

significant difference between Grant and No Grant mothers in mother's

perception of helpfulness of staff

with coping.

Objective III: Neonatal Perception Inventory (NPI)

Mean scores for the Average Baby and Your Baby questionnaires are reported for both the pre- and the








-34-


post-evaluation for the entire sample. Mean changes which

took place in the entire sample's perception of their baby as compared to the average baby from admission to discharge have also been analyzed.

The questions which were asked were, "Did the sample's perception of their baby as compared to their perception of the average baby change from admission to discharge?" and "Was this change favorable?"

The pre-evaluation scores for the < 1500 gram group and the > 1500 gram group of mothers on the NPI were compared to see if a significant difference existed in a mother's perception of her infant based on the infant's weight. This

same analysis was done for the Grant vs. No Grant mothers. Both comparisons used One Way Analysis of Variance.

The post-evaluation NPI questionnaires were analyzed in the same manner as the pre-evaluation NPI.

Finally, pre-evaluation difference scores were compared

to post-evaluation difference scores for the < 1500 gram and > 1500 gram groups and the Grant vs. No Grant groups to ascertain if there were significant changes in perception from admission to discharge depending on the infant's weight or whether or not his family qualified for the CMS Perinatal Grant. T-tests for Related Samples were used to make these comparisons.







-35

Hypothesis XI: On the preevaluation, the difference scores on the NPI for mothers Of infants who weigh < 1500 grams will not be significantly different from those of mothers of infants who weigh > 1500 grams.

Hypothesis XII: On the preevaluation, the difference scores on

the NPI for Grant mothers will not be significantly different from

those of the No Grant mothers.

Hypothesis XIII: On the postevaluation, the difference scores on

the NPI for mothers of infants who weigh < 1500 grams will not be significantly different from those of mothers of infants who weigh > 1500 grams.

Hypothesis XIV: On the postevaluation, the difference scores on

the NPI for Grant mothers will not be significantly different from those of the No Grant mothers.








-36-


Hypothesis XV: There will be no

significant change in the difference

scores on the NPI from the pre- to the post-evaluation between mothers of infants weighing < 1500 grams and

mothers of infants weighing > 1500

grams.

Hypothesis-XVI: There will be no

significant change in the difference

scores on the NPI f rom the pre- to the post-evaluation between Grant

and No Grant mothers.

Objective III: Degree of Bother Inventory. The Degree of Bother Inventory was analyzed to ascertain how bothersome

the entire sample perceived their infant to be at one month post-discharge and whether a difference existed in the perception of bother, depending on which group the mother belonged to. Means were used to describe the entire group, and One Way Analysis of Variance was used to compare the groups.

Hypothesis XVII: There will be no

significant difference in how

bothersome the infant is perceived to be at one month post-discharge

between mothers of infants weighing








-37-


< 1500 grams and mothers of infants

weighing > 1500 grams.

Hypothesis XVIII: There will be

no significant difference in how

bothersome the infant is perceived to be at one month post-discharge between mothers in the Grant and No

Grant groups.

Objective IV: Parent Understanding of the Infant's Behavior and Needs. The average number of correct responses

on the pre- and post-evaluation tests was reported for the entire sample, and a comparison was made between the preand post-tests to document any changes for the group as a whole.

In addition, the pre-test and the post-test were analyzed separately to see if there were significant differences in the number correct between mothers whose

infants were in the < 1500 gram group and mothers whose infants were in the > 1500 gram group. This same analysis

was done for Grant vs. No Grant mothers. One Way Analysis

of Variance was used for both comparisons.

Finally, data from each group of mothers were analyzed using T-tests for Related Samples to see if there were significant differences in the number correct from the pre-test to the post-test.







-38-


Hypothesis XIX: There will be no significant differences in the number correct on the pre-evaluation

test of a mother's understanding of her infant's behavior and needs

between mothers of infants weighing < 1500 grams and mothers of infants weighing > 1500 grams.

Hypothesis XX: There will be no significant differences in the number correct on the pre-evaluation

test of a mother's understanding of her infant's behavior and needs between mothers in the Grant and No Grant groups.

Hypothesis XXI: There will be no significant differences in .the number correct on the postevaluation test of a mother's understanding of her infant's behavior and needs between mothers of infants weighing < 1500 grams and mothers of infants weighing > 1500 grams.

Hypothesis XXII: There will be no significant differences in the







-39-


number correct on the postevaluation test of a mother's understanding of her infant's behavior and needs between mothers in the

Grant and No Grant groups.

Hypothesis XXIII: There will be

no significant change from the preevaluation to the post-evaluation in

the number correct on the test of a mother's understanding of her infant's behavior needs between mothers of infants weighing < 1500 grams and mothers of infants

weighing > 1500 grams.

Hypothesis XXIV: There will be no

significant change from the preevaluation to the post-evaluation in

the number correct on the test of a mother's understanding of her infant's behavior needs between

Grant and No Grant mothers.

Limitations

1. This was a Pre-experimental Pre-Test/

Post-Test Design (Campbell and Stanley,

1963) with comparisons made between subgroups. This study is subject to the same








-40

internal and external validity problems as

any design of this type.

2. Aspects of the study measuring maternal

satisfactions with services provided by the

staff fit a Pre-Experimental One-Shot Case Study Design (Campbell and Stanley, 1963).

These measures are subject to the same sources of internal and external invalidity

as any design of this type.

3. The sample size was small. These results

might have been more definitive had the

sample size been bigger.

4. Participants in this study were volunteers. They may not represent the total

population to whom services are available.

5. Instruments used in this study may need

refinement to increase reliability and

construct validity.

6. In using the structured questionnaire

format to obtain the measures, the subjects

may have been forced to choose responses which did not really represent their

attitudes.

7. The questions selected could have been

misinterpreted by some of the respondents.













TABLE 3-1

SUMMARY OF DESIGN AND ANALYSIS PROCEDURES

An Evaluation of a Kodel of Instruct ion
and Support for Mothers of Infants Admitted
to a Regional Neonatal Intensive Care Unit


Independent Varijables: Background of Mothers

(1) Overall sample of uk-thers


(2) Mothers of infants weighing
< 1500 gins. vs. mothers of infants
weighing > 1500 gm-s.


Criterion Measure Reliability


Data
Collection ___ Analysis


Description of overall group labels and ranges

Description of each group's labels and ranges, On~e Way Analysis of Variance, Chi Square Contingency Tests


Moerator Variable

(3) Mothers of infants who are on
the CMS Perinatal Grant vs. mothers
of infants rn)t Grant eligible


Description of each
group's labels and ranges, One~ Way Analysis of Variance, Chi Square Contingency Tests


4S


'lb Be Described in Background of Mothers


Age
Race
Grant eligibility Marital status Support person Level of education Prenatal care Prenatal ccnpl icat ions


Intake


Wi
(j)




(n)
(0)


Between /Villissioni andj Or-K Month PostDischarge of Infant


Delivery c"Vnlications Gravida
Para
Abort ions
Number of previous
children in an NICLU Number of calls/week to Nicu Number of visits/week to NICIJ


(a)
(b)
(C)
(d)
(e)
(f)
(g)
(h)














To Be Described in Background of Infants


(a)
(b)
(c)
(d)
(e)


Gestational age Size: SCA, AGlA, IrA Weight
Length
Intraventricular hemo~rrhage


Intake


Ctf)
(g)
(h)

Mi
(j) Wk


Between Admiss ion and one Month PostDischarge of Infant


Clinical asphyxiation Anamol les
Physician recommnendat ion for intervention
Length of stay Transferred before discharge Admitting diagnosis


Dependent Variables:
Intervention Objectives

(1) mother's understanding of
infant condit ion and care



(2) Mother's coping skills


Parent Understanding of Infant's Condition and care C(locally constructed scale)

Parent Coping Scale (Part A), modification of BenfieldLieb Questionna ire)


NICU staff help
with coping (Part B)


(3) mother's perception of
her infant


Broussard Neonatal Perception Inventory


Not
Applicable


Post-Evaluation
only


Coefficient Pre- and PostAlpha Evaluation. Pretest as
soon as mother's oondltion permits after the infant's adnission to
the NICIJ. Post-test at
one mi-.nth post-discharge.


Nut
Appl icable



Reliability Previously
Established


Post-Eva luat ion
only



Pre- and PostEva luat ion


item by itEm analysis of questionnaire. Chi Square Contingency Tests.

Item by item analysis of changes in sample coping. one Way ANCYVA, T-Test for Related Samples



Item by item, ov.erall satisfaction.
Chi Square Contingency Tests.

Difference scores on total sample, pre& post-. One Way AkE)VA of difference scores, pre- & postfor each group. TTests for Related Samples on changes between pre- & postfor each group.











Table 3-I--continued Intervention Objectives


CriteL ion Measure

IDsjree of other


(4) Mother's understanding of
newborn arid premature
behavior and needs


Parent Understanding of infant's Behavior
and Needs (locally constructed test)


He Ijabi Ilily

Rel iabilIi ty Previously



KuderRichardson
Formnula 20


Data
collect ion Aayi


lkost-Evaiuat ioni
Only



Post-Evaluation
only


Overall sample Bother sco~re, Orye Way AN)VA to compare groups, post-.


Total sample average number correct, preI. post-. T-Tests for Related Samples on changes in average number correct for total sample between pre& post-. Onle Way AIK)VA o average number correct, pre- p f or each group. One Way NVA on average number correct, post- for each group. T-Test for Related Samples difference scores between pre- & postfor each group.


Purposes:


To describe the overall group of infants. lb describe the overall group of mothers. To describe the mothers of each weight group of infants. Tob describe the infants in each weight category. lb describe the mothers in the Grant and mon-Grant categories. 'lb describe the infants in the Grant arid non-Grant categories. To determine the effectiveness of efforts toward each intervention objective. 'lb determine if the needs for maternal intervention differ between the two* weight groups of infants. To determine if the needs for maternal intervention differ between iwothers of grant eligible infants vs. non-grant eligible infants.


(a)
(b)
(C)
(d)
Ce) Mf
(g)
(h)

Mi
















CHAPTER IV
RESULTS


The purpose of this study was to evaluate the

effectiveness of a system of instruction and support which had been designed for mothers of infants admitted to a neonatal intensive care unit. Considered were the overall effectiveness of the program model as well as its effects on certain members of the population being served.

This chapter presents the analysis of the results of this study for each of the original proposed hypotheses. Each hypothesis was tested at the .05 level of confidence. Depending on the nature of the data, each hypothesis was tested using One Way Analysis of Variance, Chi Square

Contingency Tests or T-test for Related Samples. It was

decided that percentages, rather than proportions, would be used to facilitate interpretation of the Chi Square Contingency Tests. The size of the subgroups being compared remained constant, making this type of reporting possible.

Background Data

Entire Sample of Mothers in Study

Background variables for the entire sample of thirty mothers, including demographic data, delivery information


-44-







-45-


and psychosocial variables, are described in the Appendix (Table A-i) . The background variables of the infants are presented in Table A-2 in the Appendix. Included are

demographic data and admission diagnoses. This sample of

infants is supposed to represent admissions to ORMC's NICU between September 18, 1982, and March 3, 1983, who were considered high risk. During that time period, 195 infants were admitted to the NICU. One hundred fifteen infants were

deemed high risk by the study criteria, and of these, 27 infants expired. Seventy mothers of high risk infants

originally agreed to participate in the study, and 30 mothers completed both the pre- and post-evaluations. When the entire sample is broken down by weight, 16 infants fall

into the < 1500 gram group and 14 infants fall into the > 1500 gram group. If the sample is subdivided into the Grant and No Grant categories, 19 infants fall into the Grant group while 11 are No Grant. Background Data by Weight

Table 4-1 breaks down the background variables of the mothers into two categories and compares mothers of infants who weighed < 1500 grams with mothers of infants weighing > 1500 grams.

Hypothesis I: There will be no

significant difference in background variables between mothers of infants







-46-


TABLE 4-1


Background Variables of Mothers with
Infants Weighing < 1500 Grams and > 1500 Grams


Infants < 1500 gins


Infants > 1500 gins


Total in each group



Demographic Data

Mean age Marital status
Married Single
Separated Divorced Race
White Black Other
Mean educational
level


16


25 yrs.


12
3
1
1


11 (69%) 4 (25%) 1 ( 6%)

12. 25 yrs.


14


28 yrs.


9
2


11 (79%)
2 (14%) 1 ( 7%)

12.71 yrs.


Delivery Data

Mean Gravida Mean Para
Mean Abortions Caesarean sections Premature rupture of membranes Premature labor Placenta Previa or Abrupto Other maternal risk factors


Psychosocial

Support person present for
delivery
Mean prenatal care visits Previous child in NICU Mean calls to NICU/week Mean visits to NICIJ/week Qualified for CMS Grant


1.9
1.8
1.2
8 (50%) 7 (44%) 5 (31%) 3 (19%) 8 (50%)


15 (94%)

8
5
9
5 10 (62%)


3.1
1.8
1. 1
4 (29%) 2 (14%) 1 ( 7%)
2 (14%) 3 (21%)


11 (77%)


15
8
9 (64%)







-47-


weighing < 1500 grams and mothers of

infants weighing > 1500 grams.

One Way Analysis of Variance and Chi Square Contingency

Tests were used to compare these two groups of mothers. Significant differences were found in only one area, the number of calls made per week to inquire about the baby (Table 4-2). Mothers of the larger infants averaged calling

15.8 times per week (slightly more than twice per day), whereas the mothers of the smaller babies averaged 9.9 times per week (a little over one call per day).

Demographic and admitting information broken down and compared by weight of the infant is included in Table 4-3.

Hypothesis II: There will be no

significant difference in background variables between infants weighing

< 1500 grams and infants weighing

> 1500 grams.

The two weight groups of infants were compared using One Way Analysis of Variance. Significant differences

(Table 4-4) were found only in those areas directly related to the size of the infant including birth weight, gestational age, and some at risk criteria. Low birth weight

infants are admitted to the NICU for problems related to prematurity. Larger infants are usually admitted because they are in distress before or during birth. When an infant







-48-


TABLE 4-2


Significant Differences
Between Mothers of Infants
Weighing < 1500 Grams and > 1500 Grams


Number of calls to the NICU per week*

Mean S.D. D.F. F. Significance

< 1500 grams 9.9 4.5 1.27 5.0 .034

> 1500 grams 15.8 9.3


*All comparisons were made using One Way Analysis of Variance.



is distressed, he may have a bowel movement (meconium) in utero and/or may be born evidencing one or more of the following: poor color, poor respiratory effort, a low heart

rate, poor muscle tone, no cry. The infant is assessed in these five areas at one and five minutes of life and assigned a score called an APGAR (So named after Virginia Apgar. Each letter is assigned a name to remind delivery personnel to assess that area: A--appearance; P--pulse;

G--grirnmace; A--activity; R-respiration). The infants in the larger weight category, in addition to being

significantly larger (2354.1 grams vs. 1076.2 grams) and older (36.7 weeks vs. 30.7 week), had significantly lower one minute APGAR scores (3.4 vs. 5.3) and a higher incidence

of meconium staining (43% to 0%). A significantly greater

percentage of the higher weight babies evidenced clinical







-49-


TABLE 4-3


Background variables of
Infants in Each Weight Category


Demographic Data


Males
Females

Mean hospital stay Transferred prior to discharge Mean gestational age Size for gestational age
Small
Average
Large
Mean birth weight Mean birth length


< 1500 gins


9 (56%) 7 (44%)

58 days
3 (19%)
30. 7 wks.

7 (44%) 9 (56%) 0 ( 0%) 1076 gins
37 cm


> 1500 gins


4 (28%) 10 (71%)

41 days
2 (14%) 36.7 wks.

4 (31%) 8 (65%) 1 ( 8%)
2354 gins
43 cm


Risk Factors


Mean 1 minute APGAR Mean 5 minute APGAR Clinically asphyxiated Intraventricular hemorrhage Congenital anainoly Very premature Premature Breech
Meconiun stained


Major Admitting Diagnosis
(> 25% of Sample)

Respiratory Distress Syndrome Pneumonia Hyperbilirubinehia Hypotens ion/Shock Hypocalceinia Sepsis, Septisemia, R/Osepsis, Hypovolemia Other


5.3 6.7
7 (44%) 3 (19%)
0
6
7
2 (12%)
0


2 (12%) 5 (31%) 6 (37%) 6 (37%) 4 (25%) 9 (56%) 3 (19%) 9 (56%)


3.4
5.6
13 (93%) 3 (21%) 2 (14%)
0
3
1 (17%) 6 (43%)


2 (14%) 2 (14%) 2 (14%) 4 (29%) 1 ( 7%) 9 (64%) 4 (29%) 3 (21%)








-50

TABLE 4-4


significant Differences Between Infants Weighing
< 1500 Grams and > 1500 Grams

One Minute APGAR Score


< 1500 grams > 1500 grams






Risk Factor

Not asphyxiated




Asphyxiated






Column Totals
2
x
6.04


< 1500 grams > 1500 grams


One Way

mean 5.37 3.35


Analysis of Variance


S. D.

2.6

2.0


D. F.

1.28


F .

5.42


Sig


Asphyxia

Chi Square Contingency Test

< 1500 gr > 1500 gr


14


16


DF
1


nif icance .027









Row Totals

10




20 30


p
.014


Gestational Age

one Way Analysis of Variance Mean S.D. D.F. F.

30.7 2.1 1.28 34.2

36.7 3.4


Significance

.000


9 1
56% of 7% of
< 1500 gr > 1500 gr
group group

7 13
44% of 93% of
< 1500 gr > 1500 gr
group group








-51-


Table 4-4--continued


< 1500 grams > 1500 grams


Risk Factor

No Meconium




Meconium






Column Totals
2
x
6.10


One Way

Mean 1076.2

2354.1


Birth Weight

Analysis of Variance S.D. D.F. F. 272.3 1.28 38.8 769.2


Meconium at Birth

Chi Square Contingency Test

< 1500 gr > 1500 gr

16 8
100% of 57% of
< 1500 gr > 1500 gr
group group

0 6
0% of 43% of
< 1500 gr > 1500 gr
group group


16


DF
I


14


Significance

.000


Row Totals

24




6 30


p
.013







-52-


signs of asphyxia (93% vs. 44%). The differences between

the two compared groups were evident only in the areas expected. In all other areas, the groups appear to be approximately the same.

Background Data by Grant

The background variables were also analyzed to ascertain if differences existed between mothers whose infants did and mothers whose infants did not qualify for a grant which underwrote the baby's hospital costs (Table 4-5).

Hypotheses III: There will be no

significant difference in background variables between mothers whose babies qualify for the CMS Peninatal Grant and mothers whose babies

do not.

The Grant and No Grant group of mothers were found to be different with respect to mean age and mean level of education (Table 4-6). Mothers of the No Grant babies were

significantly older, averaging 28 years, while mothers in the Grant group averaged 24 years. No Grant mothers, on the average, completed 14.2 years of schooling while Grant

mothers averaged 11.5 years. All other background variables were essentially the same. One Way Analysis of Variance and Chi Square Contingency Tests were used to compare the two groups.







-53-


TABLE 4-5


Background Variables of Mothers
Whose Infants Did and Did
Not Qualify for the CMS Grant No Grant Grant


Total in each category


11


19


Mean age Marital Status
Married Single
Separated Divorced Race
White Black Other
mean educational level


28 yrs.


11 (100%)
0
0
0

9 (82%)
0
2 (18%) 14.2 yrs.


24 yrs.


10 (53%) 5 (26%) 2 (10%) 2 (10%)

13 (68%) 6 (32%)
0
11.5 yrs.


Delivery Data

Mean Gravida Mean Para mean Abortions Caesarean sections Premature rupture of
membranes
Premature labor Placenta Previa or Abrupto other maternal risk factors

Psychosoc ial


Support person present
for delivery
Mean prenatal care visits Previous child in NICTI Mean calls to NICU/week Mean visits to NICU/week


11 (100%)

8
4 ( 36%) 13
8


2.4
1.5
1.2
4 (36%) 5 (45%)

3 (27%) 3 (27%) 2 (18%)


2.2
2.0
1.2
8 (42%) 4 (21%)

3 (16%)
4 (21%) 9 (47%)


15 (79%)

10.8
2 (10%) 12
6







-54-


TABLE 4-6


No Grant Grant






No Grant Grant


Significant Differences Between Mothers Whose Infants Did and
Did Not Qualify for the CMS Grant

Maternal Age*

Mean S.D. D.F. F.

28.6 2.7 1.28 5.47

24.8 4.9


Me

Mean 14.*2

11.5


an Educational Level*

S.D. D.F. F

2.8 1.28 12


.09


Significance

.027






Significance

.002


1.4


*All comparisons were Variance.


made using One Way Analysis of


The background variables of the infants in the Grant and No Grant group were also compared using One Way Analysis of Variance (Table 4-7).

Hypothesis IV: There will be no

significant difference in background variables between infants whose

medical expenses are covered by the CMS Perinatal Grant and infants

whose expenses were not covered.

No significant differences were found between these two groups of infants. They can be considered essentially alike.







-55-


TABLE 4-7

Background Variables of Infants Who Did and Did
Not Qualify for the CMS Grant


No Grant


Demographic Data


Males Females


-(64%) 4 (36%)


Mean hospital stay 44 days
Transferred prior to discharge 3 (27%) Mean gestational age 33.5 wks.
Size for gestational age
Small 6 (60%)
Average 4 (40%)
Large 0
Mean birth weight 1587 gins
Mean birth length 36.9 cm.


Grant



10 (53%) 9 (47%)

53 days
2 (10%)
33.5 wks.

5 (26%) 13 (68%) 1 ( 5%) 1722 gins
41.9 cm


Risk Factors


Mean 1 minute APGAR Mean 5 minute APGAR Clinically asphyxiated Intraventricular hemorrhage Congenital anamoly Very premature < 1500 gins > 1500 gins Premature Breech
Meconiun stained

major Admitting Diagnosis
(> 25% of Sample)

Respiratory Distress Syndrome Meconium Aspiration Pneumonia Pneumonia Aspiration of Fluid or Blood Hyperbil irubinemia Apnea/Bradycard ia Seizures
Hypotension/Shock Polycythemia Hypocalcemia Sepsis or Suspected Sepsis Persistent Fetal Circulation Hypovolemi a Other


4.3
6.1
8 (73%) 4 (36%) 1 (9%) 1 (9%) 6 (54%) 5 (45%) 5 (45%)

2 (18%)


2 (19%) 1 ( 9%) 3 (27%) 1 (9%) 1 (9%) 1 (9%)
0
3 (27%)
0
1 ( 9%) 6 (54%) 1 (10%) 3 (27%) 5 (45%)


4.5
6.2
12 (63%) 2 (10%)
1 ( 5%)
5 (26%) 10 (52%) 9 (47%) 5 (26%)

4 (21%)


2 (10%) 2 (10%) 4 (21%) 1 ( 5%) 7 (37%) 2 (10%) 2 (10%) 7 (37%) 1 ( 5%)
4 (21%) 12 (63%) 1 ( 5%)
4 (21%) 9 (47%)








-56-


Objectives

An attempt was made to analyze the effectiveness of the NICU staff's efforts toward each intervention objective.

Three questions were asked: (1) How effective were the

interventions on the entire sample of thirty mothers? (2)

Did the effects of the interventions differ according to the size of the infant? (3) Did the effects of the

interventions differ based on whether or not the infant's family qualified for the CMS Perinatal Grant? Objective I - Parent Understanding of the Infant's Condition and Care

This questionnaire was given at one month postdischarge only. Its purpose was to ascertain how helpful the mother thought the NICU staff had been in helping her understand her infant's condition and care from the time of admission to discharge. It was designed to measure her

satisfaction with the instructional and support services

available to her. The mother was asked to respond on a Likert-type scale. Her choices ranged from very helpful to confusing. Other response choices available were did not receive this service and other.

An item by item analysis of this instrument was conducted using Chi Square Contingency Tests. Table A-3 was generated from the Chi Square data and represents the

relative effectiveness of each area the NICU staff attempts to address with the mother while her infant is a patient.







-57-


Table A-3 shows the mean score for each item for the whole sample, what percent of the entire sample did not receive that particular service, what percent of the entire sample found this service to be very helpful or helpful, and

finally, what percent of the subgroups (weight and grant) found each service to be very helpful or helpful. In every

area, the staff was rated to be helpful or very helpful.

Table 4-8 further breaks down how the staff was rated by the entire sample on the areas covered by objective I. Shown are the services rated most highly and least highly, as well as areas where a significant percentage of the sample reported not receiving the service at all. The most

highly rated areas appear to cluster around the services rendered at the time of the baby's admission. The staf f

seems to be adept at discussing the policies of the NICU and

what is happening to the baby. The admission materials

which include booklets about the NICU, prematurity, and

stimulating the baby, as well as information on counseling services, appear to be well received by a majority of the sample. The conferences with the doctors and the emphasis placed on visiting the infant often also were perceived as very helpful.

The two areas where the staff was least highly rated were in providing information about services in the hospital and in the community.






-58-


TABLE 4-8

Parent Understanding of Infant's Condition and Care
Results of objective I for the Entire Sample

Percent of Group Who Found Very
Most Highly RatedAreas Mean Score * Helpful or Helpful

Explanations about baby's appearance and condition 378

Admission materials 3.6 93

Explanations on NICU visiting and phoning policy 3.6 90

Conference with
doctor 3.6 80

Information on
importance of
visiting often 3.6 73

Least Highly Rated Areas

Information about services available in the hospital 2.9 57

Information about services available in the community 2.9 40

Reported Not
Receiving This Service Percent

NEQ-PIE Visits 86

Information on services available in the community 53

Being shown how to play with and stimulate baby 43

Discharge materials 24

Discharge teaching 21

Information on services available in the hospital 20
* Response choices range from 4 (very helpful) to1 (confusing). Other response choices included 0 (did not receive service) and 5 (other).








-59

There were six areas where large numbers of the sample reported they did not receive a particular service. The

largest gap was found in Neonatal-Parent/Inf ant Education staff visits. Since home visits are only offered to those infants who are at the very highest risk for a developmental

delay, not many of these families were asked to participate. This accounts for the high percentage of the sample not receiving this service. Fifty-three percent of the

sample did not receive information on services available in the community, and forty-three percent were not shown how to play with and stimulate their baby. At discharge, 24

percent did not receive discharge materials, and 21 percent did not have discharge teaching. Finally, 20 percent of the

sample said they did not receive information on services available in the hospital.

The data from objective I were analyzed to ascertain if differences in satisfactions existed between mothers of infants weighing < 1500 grams and mothers of infants weighing > 1500 grams.

Hypothesis V: There will be no

significant difference in intervention effects between mothers of infants weighing < 1500 grams and

mothers of infants weighing > 1500 grams in mother's understanding of

the infant's condition and care.







-60-


Objective I data was reanalyzed to compare mothers whose infants qualified for the CMS Perinatal Grant and mothers whose infants did not.

Hypothesis VI: There will be no

significant difference between Grant

and No Grant mothers in mother's understanding of the infant's condition and care.

Chi Square Contingency Tests were used to test Hypotheses V and VI. Table 4-9 displays the most highly rated areas by subgroups and Table 4-10 displays the least highly rated. The only significant difference found between

subgroups was in the area of providing information on the importance of visiting the baby often (Table 4-11).

Ninety-one percent of the No Grant mothers found this very helpful or helpful while only 84% of the Grant mothers perceived this as very helpful or helpful. Objective II - Parent Coping Scale (Part A)

The "A" part of this scale was administered to the mothers as soon as possible after her baby's admission to the hospital when her medical condition permitted. This

same scale was administered at one month post-discharge with

the mother being asked to rate how she coped during the baby's hospitalization (Table A-4). Each item on the scale contained a situation and the mother was asked to rate how much of a problem she thought the situation was. Four








-61-


TABLE 4-9

objective I
Areas Most Highly Rated by Each Subgroup


Subgroup < 1500 gm


> 1500 gm


No Grant Grant


Are a


Information packet Explanations, visiting and phoning Picture
Explanations, appearance and condition Explanations, equipment and care Importance of visiting and phoning


Information packet Picture
Explanations, appearance and condition Explanations, visiting and phoning Explanations, equipment and care Importance of visiting


Information packet Explanations, appearance and condition Explanations, visiting and phoning Explanations, equipment and care Picture
Explanations, scrubbing and gowning Importance of visiting


Information packet Explanations, visiting and phoning Picture
Explanations, appearance and condition Explanations, equipment and care Explanations, scrubbing and gowning


Percent


88 87 81 81 81 81


100 93 93 93 93 93


100 100 100 91 91 91 91


93 90 97 87 97 83








-62-


TABLE 4-10 Objective I
Areas Least Highly Rated by Each Subgroup


Subgroup < 1500 gmn > 1500 gim No Grant


Grant


Are a

NEO-PIE visits Services in community NEO-PIE visits Services in community Play and stimulation NEO-PIE visits Services in community NEO-PIE visits Services in community


Percent

12 44


14 36

43


9

18 13

40








-63-


TABLE 4-11


Parent Understanding of the Infant's Condition and Care


Objective I Significant Differences
Between Mothers Whose Infants Did
and Did Not Qualify for the CMS Grant


Information Given on the Importance of
Visiting the Baby Often*


Response


No Grant


Confusing Helpful Very Helpful Other


0 2
0% 10%

5 1
45% 5%

5 15
45% 79%


1 9%


1
5%


b I


Column Totals


11


2
x


8.11


19


D. F.

3


30


P .

.044


* All comparisons were made using Chi Square Contingency Tests.


Grant


Row Totals


2


6


20


2







-64-


responses were possible: (1) never a problem; (2) sometimes a problem; (3) often a problem; (4) always a problem. The

data gathered were analyzed on an item by item basis to determine which areas of coping presented the least problems

and which areas presented the greatest problems initially and then over the course of the baby's hospitalization.

Table 4-12 presents the areas causing the least problems to the entire sample of mothers at admission and at one month post-discharge. The first two items, being afraid to see the baby and visiting the baby, appear to have consistently not been a problem across time. At admission, the other

areas which caused the least problems for the entire sample of mothers were wanting to be alone, being in a bad mood, anger, and the relationship with the baby's father. Other

items on the post-test rated as creating the least problem were understanding the baby's problems, eating, confidence in caring for the baby, and being scared to take the baby home.

Table 4-13 displays those areas rated as causing the greatest problems at admission and during the infant's hospitalization. Unlike the shifts that took place across time in the areas rated as causing the least problem, very little change took place from admission to discharge in those areas rated as causing the greatest problems. Praying

for the baby, money worries, being afraid the baby might die, sadness, and not believing what was happening all







-65

TABLE 4-12

Parent Coping Scale (Part A)
Results of Objective IIA for the Entire Sample

Areas Causing the Least Problems

Mean
Pre-test Score

Being afraid to see baby 1.3

Visiting baby 1.4

Wanting to be alone 1.6

Bad mood 1.7

Anger 1.7

Relationship with baby 1.7


Post-test

Being afraid to see baby 1.2

Visiting baby 1.6

Understanding baby's problems 1.6

Eating 1.7

Confidence in caring for baby 1.7

Scared to take baby home 1.7







-66-


TABLE 4-13


Parent Coping Scale (Part A)
Results of Objective IIA for the Entire Sample


Areas Causing the Greatest Problems


Mean
Pre-test Score

Praying for baby 3.0

Money worries 2.6

Afraid baby might die 2.6

Thinking and dreaming 2.4

Not believing 2.4

Sadness 2.4


Post-test

Praying for baby 3.2

Sadness 2.7

Money worries 2.6

Afraid baby might die 2.5

Not believing 2.4

Depression 2.3







-67-


occupied a high priority on the greatest problem list.

Thinking and dreaming about the baby at admission was replaced by depression during the course of the baby's stay.

Significant differences in ratings between the preevaluation and the post-evaluation were found in three areas of coping (Table 4-14). Sadness increased from a mean score

of 2.3 on the pre-evaluation to a mean score of 2.7 on the post-evaluation for the entire sample of mothers. Being in

a bad mood also increased over time from a mean score of 1.7

to a mean score of 2. 1. Understanding the baby's problems became less of a problem. The mean score on this item

decreased from 1.9 to 1.6. One Way Analysis of Variance and T-Tests for Related Samples were used to analyze the data on the "A" part of the Parent Coping Scale.

The question about whether the mother had different coping responses, depending on the weight of her infant, was addressed next.

Hypothesis VII: There will be no

significant changes in coping during the infant's hospitalization between mothers whose infants are in the < 1500 gram group and mothers whose infants are in the > 1500 gram

group.

Table 4-15 allows a comparison of pre- and postevaluation data by weight groups,. It shows the areas of







-68-


TABLE 4-14


Parent Coping Scale (Part A) Objective IIA Significant
Differences Between Pre and
Post Evaluations for the Entire Sample


mean


sadness*

Pre-test Post-test Bad mood*

Pre-test Post-test


2.3 2.7




1.7

2.1


S.* D. .76


D. F.



29


T Value


-2.26


.84


.74 .93


29


Understanding Baby's Problems*


2.0 1.6


.67 .56


29


*All comparisons were made using T-Test for Related Samples.


Sig.


.031


-2.56


.016


Pre-test Post-test


3.00


.005







-69-


TABLE 4-15


Parent Coping Scale (Part A)
Results of objective IIA Comparing
Mothers with Infants in Each Weight Group Areas Causing the Least Coping Problems


Pre


Post


Afraid to see baby
(1.3)
Anger (1.5) Relationship with
baby's father (1.5) Visiting baby (1.5)



Wanting to be alone
(1.4)
Afraid to see baby
(1.4)
Visiting baby (1.4) Bad mood (1.7)


Afraid to see baby
(1.1)
Eating (1.5) Sleeping (1.6) Visiting baby (1.6) Understanding baby's
problems (1.6)


Afraid to see baby
(1.3)
Visiting baby (1.6) Understanding baby's
problems (1.6)
Scared to take baby
home (1.6)


Areas Causing the Greatest Coping Problems


Praying for baby (3.1) Afraid baby might die
(2.8)
Thinking and dreaming
(2.4)
Not believing (2.4) Money worries (2.4)


Praying for baby (3.0) Money worries (2.8) Thinking and dreaming
(2.4)
Depression (2.4)


Praying for baby
(3.1)
Sadness (2.7) Money worries (2.6)


Praying for baby
(3.3)
Sadness (2.8) Not believing (2.8)
Afraid baby might
die (2.7)


<,1500 grams > 1500 grams


< 1500 grams


> 1500 grams








-70

coping that caused the least and the greatest problems. For both weight groups, on both pre- and post-evaluation data, two areas stood out as causing the least problems: being afraid to see the baby and visiting the baby. of the

areas causing the greatest coping problems, praying for the baby occupied the highest ranking for both groups on both the pre- and post-evaluat ions. money worries also appears high on the list on the pre-evaluation questionnaire for both weight groups as well as on post-evaluation questionnaire for the lower weight group mothers. Thinking and

dreaming about the baby were admission reactions from both weight groups of mothers, and sadness became a problem for both weight groups during the infant's hospital course.

How the items on the scale were ranked varied somewhat within the groups and between the groups on the pre- and post-evaluations. However, no significant differences in mean scores, using One Way Analysis of Variance for each item on the scale, were found on either the pre- or the post-evaluation between the two weight groups.

T-tests for Related Samples were used to see if changes

occurred within a particular weight group from the pre- to the post-evaluation (Table 4-16). For the < 1500 gram group

of mothers, three areas of coping changed significantly. Eating became less of a problem, falling from a mean preevaluation score of 1.9 to a post-evaluation score of 1.5. Understanding the baby's problems also became less of a







-71-


TABLE 4-16


Parent Coping Scale (Part A)
Objective IIA Significant
Differences Within Weight
Groups From Pre to Post Evaluation


< 1500 grams


Mean


Pre


Post


Bad Mood*


Pre


Post


1.9 1.5



1.7

2.1


S. D.


.89

.74


.70 .88


D. F.


14


15


Understanding Baby's Problems*


2.1 1.6


.81 .62


15


Entire Coping Scale*


Pre Post


43.4 39.3


8.0 7.7


15


> 1500 grams


Wanting to be Alone*


Pre Post


1.4 2.1


.51


13


1.29


*All comparisons were made using T-Test for Related Samples.


Eat ing*


T-Value


Sig.


2.45


.028


.048


Pre Post


2.74


.015


3.00


.009


-2.22


.045







-72-


problem, declining from 2.1 to 1.6. on the other hand,

being in a bad mood became a greater problem for this group during the course of the baby's stay, increasing from a pre-evaluation mean score of 1.7 to a post-evaluation mean of 2. 1. Coping problems, overall, decreased significantly in this group. The mean pre-evaluation score on the entire scale was 43.4. It fell to 39.3 on the post-evaluation.

Only one area of coping changed from the pre- to the post-evaluation in the > 1500 gram group of mothers.

Wanting to be alone became more of a problem as time passed. Initially, the mean score on this item was 1.4. It increased to 2.1 on the post-evaluation.

Hypothesis VIII: There will be no

significant changes in coping during the infant's hospitalization between

mothers whose infants are in the No Grant group and mothers whose

infants are in the Grant group.

Table 4-17 lists the areas judged to cause the least problems on the pre- and post-evaluation for the No Grant and Grant groups. Table 4-17 also lists those areas judged to be most problematic. As before, being afraid to see the

baby was not a problem for either group at admission or during the course of the baby's stay. On the preevaluation, wanting to be alone was not a problem for either







-73-


TABLE 4-17


Parent Coping Scale (Part A)
Results of objective IIA Comparing Mothers with Infants in the No Grant and Grant Groups

Areas Causinq the Least Coping Problems


Pre


Post


No Grant Relationship with baby's Relationship with baby's
father (1.2) father (1.3)
Afraid to see baby (1.3) Afraid to see baby (1.3)
Wanting to be alone (1.4) Visiting baby (1.3) Understanding baby's
problems (1.3)


Visiting baby (1.3) Afraid to see baby (1.4) Anger (1.7) wanting to be alone (1.7)


Areas Causing Greatest C


Praying for baby (3.0) Afraid baby might die
(2.8)
Not believing (2.7)


Praying for baby (3.0) Money worries (2.9) Thinking and dreaming
(2.4)
Afraid baby might die
(2.4)


Afraid to see baby (1.2) Confidence in caring for baby (1.6)
Scared to take baby home (1.6)

oping Problems


Praying for baby (3.0) Sadness (2.6) Not believing (2.4)



Praying for baby (3.3) Money worries (2.9) Sadness (2.8)
Afraid baby might die
(2.7)


Grant


No Grant Grant







-74-


group. The No Grant group found that, over the course of the baby's stay, their relationship with the baby's father caused the least problem.

In the greatest problem category, praying for the baby had the highest mean item score on both the pre- and postevaluation for both the No Grant and Grant groups. The

pre-evaluation showed high mean scores for being afraid the baby might die for both groups of mothers, but it remained a problem for the Grant group only. The post-evaluation

indicated that sadness, while not initially a great problem for either group, became one for both groups during the course of the baby's hospitalization. The area that

remained a large problem from the pre- to the post-evaluation for the No Grant group was not believing what was

happening (shock) . In addition to being afraid the baby might die, money worries remained a high ranking coping problem for the Grant group across time.

Using One Way Analysis of Variance, significant

differences between the No Grant and Grant group were found in two areas on the pre-evaluation and in one area on the post-evaluation (Table 4-18). On the pre-evaluation, the No

Grant group had less problems in their relationship to the baby's father than did the Grant group (mean scores of 1.2 to 1. 9). They also had less worries about money (mean

scores of 2.1 to 2.9). The post-evaluation indicated that








-75-


TABLE 4-18


Parent Coping Scale (Part A) Objective IIA Significant Differences Between
No Grant and Grant Groups

Pre-Evaluation


mean


S.D.


D. F.


money worries*


No Grant


Grant


2.1

-?.


.94 .91


1.28


Relationship with Baby's Father*


No Grant


Grant


Post-Evaluation


Relationship with Baby's Father*


No Grant


Grant


1.3

2.1


.65

1.2


1.28


4.67


.039


*All comparisons were made using One Way Analysis of Variance.


F.


Sig.


6.00


.021


1.2 1.9


.40 1.2


1.28


4.3


.047







-76-


the No Grant group still had significantly less of a problem in their relationship to the baby's father than did the grant group (1.3 to 2.1). one way Analysis of Variance was also used to make the post-evaluation between group comparisons.

Significant differences within groups from the pre- to the post-evaluation were found using T-tests for Related Samples (Table 4-19). In the No Grant group, the mothers'

worry that the baby might die diminished from a mean score of 2.8 on the pre-evaluation to 2.2 on the post-evaluation. Two areas became more of a problem across time for the Grant group and one area became less of a problem. Being in a bad mood and visiting the baby had mean score increases from 1.8

to 2.3 and 1.4 to 1.8, respectively. Being afraid to see

the baby became less of a problem with the mean score decreasing from 1.4 to 1.2.

Objective II - Parent Coping Scale (Part B) Helpfulness of the Staff with Coping

The post-evaluation form of the Parent Coping Scale contained a "B" part which asked the mother to rate how helpful she perceived the NICU staff to be with areas of coping that presented problems. When the responses to Part

"B" were reviewed, it was found that the mothers not only rated the staff on their helpfulness but reported areas of coping that did not present a problem and areas where they did not tell the staff they had a problem.







-77-


TABLE 4-19


Parent Coping Scale (Part A)
objective IIA Significant
Differences Within the No Grant and
Grant Groups From Pre to Post Evaluation


No Grant


Mean


Might Die*


2.8

2.2


S. D.



.60


D. F.



10


T- Value



2.61


.98


Grant


Bad Mood*


1.8 2.3


.79 .87


18


-2.45


Afraid to See Baby*


Pr e


Post


V is i ting__!aby*

Pre Post


*All comparisons were made using T-Test for Related Samples.


Pre


Post


Sig. .026


Pre Post


.025


1.4 1.2


.51

.42


.70


18


18


1.4 1.8


2.19


-3.06


.042


.007


1.04








-78-


Table A-S displays the results of the data analysis on Part "B" of the Parent Coping Scale - Helpfulness of the Staff with Coping. Data are presented for the entire

sample, as well as for each of the subgroups, weight and grant. The table shows for each item on the scale what percentage of the group in question responded in the following ways: (a) not a problem needing help; (b) didn't

tell the staff the area. was a problem; (c) found the staff to be very helpful or helpful. The entire sample mean score for each item is also shown. Descriptive statistics and Chi Square Contingency Tests were used to generate the table and to compare groups. Very helpful (items rated 1) and helpful (items rated 2) responses were combined for each area. The

percentage of each group giving the NICU staff a rating of one or two is then reported. Other possible ratings were

not helpful (3) and made the problem worse (4). The

information thus generated made it easier to rank satisfactions with NICU services within groups and to compare the relative effectiveness of each service between groups.

Some mothers did not have a particular reaction or, if they did, felt they could handle the situation by themselves. Table 4-20 displays those areas for the entire sample of mothers. A large percentage of mothers in the sample either did not find the following to be a problem or did not want help with the problem: Being afraid to see the





-79-


TABLE 4-20


Parent Coping Scale (Part B)
Helpfulness of Staff With Coping
Results of Objective IIB for the Entire Sample


Areas Rated as Not a
Coping Problem Needing Help Percent of Total

Afraid to see baby 79
Visiting baby 59
Relationship with baby's father 55
Eating 47
Thinking and dreaming 38
Anger 37


Areas Where Staff Was Not Told This Was a Problem


Praying for baby 41
Bad mood 17
Sleeping 14


Areas Where Staff
Was Most Highly Rated*
Mean Score

Help with crying 1.0
Help with money worries 1.3
Help with visiting baby 1.3
Help with understanding baby's problems 1.3
Help with being scared to take baby home 1.3
Help with sadness 1.4


Areas Where Staff
Was Less Highly Rated*


Help with eating 2.3
Help with bad mood 2.0
Help with praying for baby 2.0
Help with sleeping 1.9
Help with anger 1.9
Help with wanting to be alone 1.9


* Response choices range from 1 (very helpful) to 4 (made problem worse). There was also another category which was broken down into 0 (was not a coping problem needing help) and 5 (the staff was not told it was a problem).







-80-


baby (79%); visiting the baby (59%); the relationship with the baby's father (55%); eating (47%); thinking and dreaming (38%); anger (37%). Many of the above-named areas mirror the areas said to cause the least coping problems for the sample as a whole on the "A" part pre- and/or postevaluations.

Table 4-20 also indicates the areas where a mother had a problem but did not tell the staff. Areas displaying the

highest percentages for the entire sample include praying for the baby (41%); being in a bad mood (17%); and sleeping (14%). Praying for the baby presented the largest coping problem on both the pre- and post-evaluat ions of Part "A". The average mother in the sample often found herself praying for the baby, but kept it to herself.

The areas where the NICU staff were rated most helpful

and least helpful by the entire sample are presented on Table 4-20. The most helpful areas include help when crying

was a problem (1.0); help with money worries (1.3); help with visiting the baby (1.3); help with understanding the baby's problems (1.3); help with being scared to take the baby home (1.3); and help with sadness (1.4). The staff was

least helpful with eating (2.3); being in a bad mood (2.0); praying for baby (2.0); sleeping (1.9); anger (1.9); and wanting to be alone (1.9).

Hypothesis IX: There will be no

significant difference between







-81-


mothers of infants weighing < 1500 grams and mothers of infants weighing > 1500 grams in the mothers' perception of helpfulness

of the staff with coping.

Hypothesis X: There will be no

significant difference between Grant

and No Grant mothers in mothers' perception of helpfulness of the

staff.

Table 4-21 shows those areas not perceived as a coping problem, broken down by subgroup. Table 4-21 also looks at the areas where the mothers did not tell the NICU staff they had a problem. The percentages displayed on this table are of the particular subgroup under each heading. In other

words, on Table 4-21, 87% of the < 1500 gram mothers found being afraid to see the baby was not a problem needing help. The rankings for the four subgroups are quite similar. Being afraid to see the baby, visting the baby and

the relationship with the baby's father were all considered problems not needing help. Praying for the baby ranked

as the greatest problem area all four subgroups kept to themselves. The > 1500 gram mothers and the Grant mothers had more areas they kept to themselves than did the < 1500 gram mothers and the No Grant mothers.







-82-


TABLE 4-21


Parent Coping Scale (Part B)
Helpfulness of Staff with Coping
Results of objective IIB for Each Subgroup

Areas Rated as Not a
Coping Problem Needing Help

< 10grams Percent

Afraid to see baby 87
Eating 56
Visiting baby 56
Thinking and dreaming 44
Relationship with baby's father 44
Understanding baby's problems 40


> 1500 grams

Relationship with baby's father 69
Afraid to see baby 69
Visiting baby 61
Wanting to be alone 46


No Grant

Relationship with baby's father 90
Afraid to see baby 80
Visiting baby 70
Understanding baby's problems 54


Grant

Afraid to see baby 79
Visiting baby 53
Eating 47
Relationship with baby's father 42








-83-


Table 4-21--continued


Did Not Tell Staff Area Presented a Problem < 10grams Percent

Praying for baby 25
Thinking and dreaming 12

> 1500 grams

Praying for baby 61
Bad mood 31
Sleeping 23
Crying 21


No Grant

Praying for baby 54
Wanting to be alone 18


Grant

Praying for baby 33
Bad mood 22
Sleeping 17
Visiting baby 16
Crying 16







-84-


Table 4-22 displays those areas where the staff was found to be most highly rated and less highly rated, broken down by subgroup. Very little variation in rankings was found between the < 1500 gram mothers and the > 1500 gram mothers. The same can be said when the Grant and No Grant mothers were compared.

Chi Square Contingency Tests were used to ascertain if significant differences in response patterns occurred

between subgroups. No significant differences were found between the < 1500 grain and > 1500 gram groups of mothers on how helpful they found the staff to be. However, significant differences were found between the No Grant and Grant mothers in two areas (Table 4-23). only 27% of the No Grant

group found the NICU staff to be very helpful or helpful when they were afraid the baby might die, whereas almost 74%

of the Grant group found the NICU staff helpful or very helpful with the same problem. When they wanted to be

alone, 50% of the Grant group found the staff to be very helpful or helpful, and only 27% of the No Grant group felt the same way. Thirty-six percent of the No Grant group indicated that the staff were either not helpful or made the

problem worse when they wanted to be alone, whereas no one in the Grant group felt this way. Objective III - Neonatal Perception Inventory (NPI)

The Neonatal Perception Inventory (NPI) was

administered to the mother at admission and at one-month







-85-


TABLE 4-22


Parent Coping Scale (Part B)
Helpfulness of Staff with Coping
Results of Objective IIB by Subgroup


Areas Where Staff Was Most Highly Rated


Percent Found
Very Helpful
< 1500 or Helpful

Sadness 100
Depress ion 75
Not believing 75
Caused baby's problems 69
Crying 69

> 1500

Sadness 93
Not believing 71
Depression 64
Understanding baby's problems 64

No Grant

Sadness 91
Not believing 73
Depress ion 64
Caused baby's problems 60
Scared to take baby home 60

Grant

Sadness 100
Money worries 78
Understanding baby's problems 78
Depress ion 74
Not believing 74
Afraid baby might die 74








-86-


Table 4-22--continued


Areas Where Staff Was Less Highly Rated


Percent Found
Very Helpful
< 1500 or Helpful

Afraid to see baby 6
Eating 25
Visiting baby 31

> 1500

Relationship with baby's father 15
Visiting baby 23
Praying for baby 23

No Grant

Eating 9
Bad mood 9
Relationship with baby's father 10
Afraid to see baby 10

Grant

Afraid to see baby 21
Visting baby 32
Relationship with baby's father 37
Eating 37







-87

TABLE 4-23


Parent Coping Scale (Part B)
Helpfulness of Staff with Coping
Objective IIB Significant Differences Between No Grant and Grant Groups

Help With Being Afraid Baby Might Die*


Response

Not a Coping Problem Very Helpful Somewhat helpful Not Helpful Made Worse Didn't Tell Staff Other


No Grant


Grant


3 4
27% 21%

1 12
9% 63%

2 2
18% 10%

2 0
18% 0%

1 0
9% 0%

0 1
0% 5%


2
18.2%


0 0%


* i.


Column Totals


2
x

14.3


Row Totals

7 13


4 2 1 1


2


19


11


D. F.

6


30


P.

.026








-88-


Table 4-23--continued


He lp


Response

Not a Coping Problem Very Helpful Somewhat helpful Not Helpful Made Worse Didn't Tell Staff


Column Totals


v4ith Wanting to be Alone*


No Grant


Grant


4 6
36% 33%

3 4
27% 22%

0 5
0% 28%

2 0
18% 0%

2 0
18% 0%


0 0%


4.


11


17% 18


2
X D. F. P.

11.52 5 .042


*Comparisons were made using Chi Square Contingency Tests.


Row Totals

10


7 5


2 2 3



29




Full Text

PAGE 1

THE EFFECTS OF A SYSTEM OF INSTRUCTION AND SUPPORT ON MOTHERS OF INFANTS ADMITTED TO A NEONATAL INTENSIVE CARE UNIT BY LINDA L. STONE DISSERTATION PRESENTED TO THE GRADUATE COUNCIL OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 1983

PAGE 2

Copyright 1983 by Linda L. Stone

PAGE 3

To My Husband Stephen who never failed to encourage, support, and love me throughout this whole endeavor and to our children, Ben and Jenny, of whom we are both so proud

PAGE 4

ACKNOWLEDGMENTS It has become apparent to me that there should not be only one name on the title page of a dissertation. It most certainly is a community effort. The following friends made this goal possible. Gregor Alexander, M.D., has made the quality of a baby's life his life's work and he always made me feel that I was an integral part of his babies' care. Brian Lipman, M.D. , is an excellent example of what a physician treating infants should be — patient, kind, gentle and an excellent teacher. Marge Brennan, B.S.N. , a very caring friend, gave of herself in so many ways to insure this paper would be completed. Loreen Francescan i ' s friendship, intelligence and humor helped me survive many obstacles when I was not sure I could. Charlie Francescani stayed with me, and with me, and with me during a thousand pages of computer printout. He helped me laugh at myself. Special thanks roust go to the following people. Gordon Lawrence, Ph.D., Chairman of my dissertation committee, unfailingly held my hand whenever I told him it -iv-

PAGE 5

needed holding. From the day we met, Dr. Lawrence made me feel I was someone special. His faith and intelligence have helped me attain a goal I never dreamed possible. Charles Dziuban, Ph.D., has been with me from the beginning, encouraging me to be independent. Sheila Davis has been the key to completing my studies. Without ever making me feel it was an imposition, she has typed and corrected all of my papers, in spite of my terrible handwriting. I want her to know how much I appreciate her. Sherry Herring took over the chores of typing my dissertation without missing a beat. She never complained about correction, after correction, after correction. For that, I will be eternally grateful. -V-

PAGE 6

TABLE OF CONTENTS , , v^; PAGE ACKNOWLEDGMENTS LIST OF TABLES ^^^^ ABSTRACT CHAPTER I. INTRODUCTION TO THE STUDY 1 Statement of the Problem 1 Background of the Study 2 Purposes of the Study 4 Design of the Study 5 Scope of the Study 6 Treatment Plan 7 II. REVIEW OF THE LITERATURE 12 Need for the Study 12 The Effects of At-Risk Birth on Infant Development 13 Problems of Adjusting to High Risk Infants 14 The Effect of Premature Birth on Maternal Coping Skills 15 Mothers' Perceptions 17 The Need for Instruction and Support for Mothers of High Risk Infants 19 III. DESIGN OF THE STUDY 21 Sample and Procedure 22 Data Collection 23 Objective I Parent Understanding of Infant's Condition and Care 24 Objective II Parent Coping Scale .... 25 Objective III Neonatal Perception Inventory and Degree of Bother Inventory 26 Objective IV Parent Understanding of Infant's Behavior and Needs 27 -vi-

PAGE 7

TO Method of Analysis ^° Background Data Objectives Limitations IV. RESULTS Background Data Entire Sample of Mothers in Study 44 Background Data by Weight 45 Background Data by Grant 52 Objectives Objective I Parent Understanding of Infant's Condition and Care 56 Objective II Parent Coping Scale (Part A) Objective II Parent Coping Scale (Part B) "^^ Objective III Neonatal Perception Inventory (NPI) Objective IV Parent Understanding of the Infant's Behavior and Needs ... 92 V. DISCUSSION ^"^ Background Data ..... 97 Objective I Parent Understanding of the Infant's Condition and Care 100 Objective II Parent Coping Scale (Part A and Part B) 102 Objective III Neonatal Perception Inventory (NPI) HI Objective IV Parent Understanding of the Infant's Behavior and Needs 112 Conclusions and Implications .... 114 Recommendations for Project Improvement . . . 120 Limitations 122 Recommendations for Further Research 122 Summary 124 APPENDIX A SUPPLEMENTARY TABLES 127 APPENDIX B STUDY INSTRUMENTS 136 APPENDIX C SAMPLES OF MATERIAL IN THE ADMISSION PACKET 148 REFERENCES 166 BIOGRAPHICAL SKETCH 17 0 -vii-

PAGE 8

LIST OF TABLES Table TABLE 3-1 TABLE 4-1 TABLE 4-2 TABLE 4-3 TABLE 4-4 TABLE 4-5 TABLE 4-6 TABLE 4-7 TABLE 4-8 TABLE 4-9 TABLE 4-10 Page . • : ' ' ^ ' * " Summary of Design and Analysis Procedures Background Variables of Mothers With Infants Weighing _< 1500 Grams ' and > 1500 Grams Significant Differences Between Mothers of Infants Weighing _< 1500 Grams and < 1500 Grams 48 Background Va''ia>^ies of Infants in Each Weight Category 49 Significant Differences Between Infants weighing < 1500 Grams and > 1500 Grams . . 50 Background Variables of Mothers Whose Infants Did and Did Not Qualify for the CMS Grant 53 Significant Differences Between Mothers Whose Infants Did and Did Not Qualify for the CMS Grant 54 Background Variables of Infants Who Did and Did Not Qualify for the CMS Grant 55 Parent Understanding of Infant's Condition and Care — Results of Objective I for the Entire Sample 58 Objective I — Areas Mostly Highly Rated by Each Subgroup 61 Objective I--Areas Least Highly Rated by Each Subgroup 62 -viii-

PAGE 9

TABLE 4-11 Parent Understanding of the Infant's Condition and Care — Objective I Significant Differences Between Mothers Whose Infants Did and Did Not Qualify for the CMS Grant 63 TABLE 4-12 Parent Coping Scale (Part A)~Results of Objective IIA for the Entire Sample ... 65 TABLE 4-13 Parent Coping Scale (Part A)--Results of Objective IIA for the Entire Sample ... 66 TABLE 4-14 Parent Coping Scale (Part A)~Objective IIA Significnt Differences Between Pre and Post Evaluations for the Entire Sample TABLE 4-15: Parent Coping Scale (Part A) — Results of Objective IIA Comparing Mothers With Infants in Each Weight Group 69 TABLE 4-16: Parent Coping Scale (Part A) — Objective IIA Significant Differences Within Weight Groups from Pre to Post Evaluation TABLE 4-17 Parent Coping Scale (Part A) — Results of Objective IIA Comparing Mothers With Infants in the No Grant and Grant Groups TABLE 4-18 Parent Coping Scale (Part A) — Objective IIA Significant Differences Between No Grant and Grant Groups 7 5 TABLE 4-19 Parent Coping Scale (Part A) — Objective II Significant Differences Within the No Grant and Grant Groups from Pre to post Evaluation 77 TABLE 4-20 Parent Coping Scale (Part B) — Helpfulness of Staff With Coping — Results of Objective IIB for the Entire Sample 79 TABLE 4-21 Parent Coping Scale (Part B) — Helpfulness of Staff with Coping--Results of Objective IIB for Each Subgroup 82 TABLE 4-22 Parent Coping Scale (Part B) — Helpfulness of Staff with Coping — Results of Objective IIB by Subgroup 85 -ix-

PAGE 10

TABLE 4-23 TABLE 4-24 TABLE 4-25 TABLE 4-26 TABLE A-1 TABLE A2 TABLE A3 TABLE A4 TABLE A5 TABLE A6 Parent Coping Scale (Part B) —Helpfulness of Staff with Coping--Objective II Significant Differences Between No Grant and Grant Groups .... Neonatal Perception lnventory--Results _ of Objective III for the Entire Sample . . 91 Parent Understanding of Infant Behavior and Needs--Results of Objective IV for the Entire Sample Parent Understanding of Infant Behavior and Needs--Objective IV Significant Diferences Between Pre and Post Test ... 96 Background Data — Entire Sample — Mothers '^^ Background Data — Entire Sample — Infants Parent Understanding of Infant's Condition and Care — Results of Objective I for Entire Sample of 30 Mothers Parent Coping Scale (Part A) — Results of Objective IIA for Entire Sample .... 131 Parent Coping Scale (Part B) Helpfulness of Staff with Coping — Results of Objective IIB for Entire Sample Objective IV — Parent Understanding of Infant Behavior and Needs Test Item Analysis 135 -X-

PAGE 11

Abstract of Dissertation Presented to the Graduate Council of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy THE EFFECTS OF A SYSTEM OF INSTRUCTION AND SUPPORT ON MOTHERS OF INFANTS ADMITTED TO A NEONATAL INTENSIVE CARE UNIT By LINDA L. STONE ; , December, 1983 * Chairman: Gordon Lawrence Major Department: Curriculum and Instruction The purpose of this study was to evaluate and document the effectiveness of a system of instruction and support developed for mothers of Neonatal Intensive Care Unit infants. An additional purpose of this study was to look at the relationship between an infant's birthweight, the family's financial status, and the mother's need for intervention. The effects of the system were measured by changes in the following areas: 1) a mother's understanding of her infant's condition and care; 2) a mother's ability to cope with the crisis of the birth of an at-risk infant; 3) a mother's attachment to her infant judged by her perception of that infant; and 4) a mother's understanding of newborn -xi-

PAGE 12

and premature behavior and needs. Maternal change was documented in these four areas between the time the infant was admitted and one month post-discharge. The sample consisted of thirty mothers of infants admitted to Orlando Regional Medical Center's Neonatal Intensive Care Unit. overall satisfaction with the services provided was demonstrated, with the greatest satisfaction apparent at admission. Some areas requiring attention became apparent, including the need for improved discharge procedures and providing information about hospital and community services. The overall sample of mothers displayed certain persistent coping problems (grief reactions). These included 1) feeling a need to pray for the baby; 2) money worries; 3) fear the baby might die; 4) sadness; 5) not believing what was happening (shock). Some grief reactions increased significantly, in spite of adequate staff support. Differences in reactions were documented between mothers of infants in the two weight categories and also between Grant and No Grant mothers. The staff was judged to be effective in meeting some of the special needs of each subgroup and ineffective in meeting others. The staff was quite effective in helping the entire sample of mothers maintain a positive attitude toward their infants and may have been instrumental in increasing the entire sample's awareness of infant behavior and needs. However, this last finding needs to be further substantiated. -xii-

PAGE 13

CHAPTER I INTRODUCTION TO THE STUDY Statement of the Problem The purpose of this study was to evaluate the effects of a system of instruction and support offered to mothers of high risk infants who had been admitted to the Neonatal Intensive Care Unit at Orlando Regional Medical Center ( ORMC ) . ] '\ ' i ' A system of instruction and support had been in place at ORMC since 1979. Until now, there had been no attempt to delineate the individual components of this system, nor had there been an attempt to document the efficacy of the system as a whole or its individual components. The field of early intervention with high risk infants and their families is relatively new. The field of neonatalogy (medicine as it relates to infants in the first twenty-eight days of life) is only about fifteen years old. Therefore, programs such as the one offered at ORMC are few in number and the evaluations of such programs even fewer. This study attempted to evaluate one such program. The evaluation looked at each of four program objectives (components) and also tried to discern if the program had -1-

PAGE 14

-2varying effects on the mothers, depending on the birthweight of their infants and whether or not the family qualified for a grant covering the infant's hospital expenses. Background of the Study In July, 1979, the United States Department of Education awarded Orange County Public Schools, in cooperation with Orlando Regional Medical Center, a three-year demonstration grant. The ultimate goal of the project was to develop a model of early intervention for at risk infants and their parents. Studies which had been conducted until that time indicated that very early intervention with both these infants and their parents might help minimize the need for institutionalization or long-term special education. Infants born at risk were found to have a higher incidence of cognitive, affective, and motor difficulties. The intent of the project was to develop a model which had two components: (1) an in-hospital component which addressed the psychoeducational needs of both the parents of infants and infants who had been admitted to the Neonatal Intensive Care Unit at Orlando Regional Medical Center (ORMC), and (2) an at-home component which addressed the needs of those infants considered to be at highest risk for a potential handicap because they met specific criteria.

PAGE 15

-3A model demonstration project must have an evaluation of its services. Through this evaluation, other agencies can make informed decisions regarding whether or not to adopt all or part of the project model. The evaluation should contribute to the existing body of literature on how effective early intervention is with infants who have been admitted to a regional neonatal intensive care unit. ECHO-Parent/Inf ant Education (ECHO-PIE) Project staff and Gregor Alexander, M.D., Director of Newborn Services, established criteria for designating which infants admitted to the Neonatal Intensive Care Unit (NICU) were to be considered at risk for a possible handicapping condition for the purposes of the project. The rationale for selecting these critera was based upon studies conducted by Apgar and James (1962), Mary Drillien (1959, 1961, 1964), and others, as well as on Dr. Alexander's experience with discharged infants who had been followed in the hospital's Children's Medical Services Neonatal Follow-Up Clinic. Once selection criteria were established, the project staff designated an evaluation to measure change in those infants identified as being at risk for a possible handicapping condition who had received project services. The evaluation design allowed thirty infants — who met the selection criteria, whose parents agreed to receive project services and who resided in Orange County — to be

PAGE 16

-Adesignated the experimental group. Thirty infants meeting the selection criteria, who did not live in Orange County and who received only in-hospital project services and not at-home services, were designated the comparison group. This design measured only the effects of the at-home component of the project model, these effects being in the form of child change only. Still to be looked at was the in-hospital component with its attendant parent change. The grant period for the ECHO-PIE project expired June 30, 1982. Beginning July 1, 1982, the Developmental Services Division of the State of Florida's Health and Rehabilitative Services funded four grants for model development in the State. The purpose of these grants was to develop a local model of very early developmental intervention for infants admitted to a Regional Perinatal Intensive Care Center. Orlando Regional Medical Center received one of these grants. This grant, in essence, allowed the hospital staff to further refine the model initiated by the ECHO-PIE project. This new project was called Neonatal Parent/Infant Education (NEO-PIE). With the advent of this grant, it was possible to evaluate the efficacy of the in-hospital component and to document parent change in addition to child change. Purposes of the Study This study attempted to evaluate a model of instruction and support developed for mothers of infants admitted to the

PAGE 17

-5Neonatal Intensive Care Unit at Orlando Regional Medical Center. The components of this model were developed in an attempt to address the multiple needs these mothers have in coping with the birth of a high risk infant. Design of the Study The effects of a model of instruction and support designed for mothers of infants admitted to a Neonatal Intensive Care Unit were evaluated on four groups of mothers of high risk infants. One group of mothers had infants weighing _< 1500 grams. This group of mothers was compared with a group of mothers whose infants weighed > 1500 grams. Mothers of infants who qualified for a grant paying the cost of the baby's hospitalization were compared with mothers whose infants did not qualify. The effects of the model were also evaluated on the entire sample of mothers. For the infants to have been eligible for the study, they must have met one or more of the following medical criteria: a birth weight of _< 1500 grams; clinical signs of birth asphyxia; an intraventricular hemorrhage; a congenital anomoly with a non-fatal outcome; physician referral. Mothers whose infants met these criteria were asked to voluntarily participate in this study. As soon as possible after an infant was admitted to intensive care and when the mother's medical condition permitted, she was asked to fill out the pre-evaluation packet. Those mothers were then

PAGE 18

-6asked to fill out a post-evaluation packet one month after the baby was discharged. Data were collected on thirty mothers. There were design and analysis issues attendant to evaluating a program in a field setting, especially this program. Perhaps the largest issue was that of establishing a control or comparison group. Since intervention with mothers and infants had been available for the past three years, it would have been difficult to withhold these services frOTi a portion of this group to establish a control. Additionally, the availability of these services appeared to have modified the attitudes and behavior of the NICU staff toward early intervention. Therefore, even if a comparison group could have been ethically established, some form of instruction and support would have been available to these mothers from the medical staff. Scope of the Study ' The goals of this evaluation were (1) to assess the effect of each objective of the intervention model on the entire group of mothers; (2) to ascertain if a mother's intervention needs were different, depending on the birthweight of her infant; and (3) to ascertain if a moderator variable, eligibility for the Children's Medical Services (CMS) Perinatal Grant, had an effect on the mother's need for intervention. This moderator variable was used to

PAGE 19

-7ascertain whether the intervention needs of the group of mothers whose infants were on the CMS Perinatal Grant were different from the needs of those whose infants were not. Treatment Plan Parent instruction and support began at Orlando Regional Medical Center in the individual hospital rooms while the mothers were patients. In the case of the infants who were transferred to ORMC, parents were contacted as soon as possible, either by phone or through the mail. Thereafter, personal contact was effected as soon as possible. The model of instruction and support included 1. The education of parents concerning what was happening to their infant in the NICU. This was initiated through personal contact by the parent counselor with each parent. When the infant was admitted, the parent counselor provided the family with (1) a picture of the infant; (2) a packet containing information appropriate to their infants' gestational age; (3) a brochure on neonatal intensive care; (4) a letter of introduction to the services of the parent counselor; (5) a selected bibliography; (6) instructions regarding visiting and phoning; and (7) instructions on how to

PAGE 20

-8reach the parent counselor day or night. Examples of some of the admission materials are included in Appendix C. During this initial meeting, the parents' immediate concerns were addressed. The anticipated results were to reduce parents' anxiety, enable them to ask better questions about their infants' condition, encourage immediate and continued visitation, and establish a relationship between the parent counselor and the parent(s). 2. The provision of individual and/or family counseling to encourage parents to move through the "grieving process" alluded to in much of the literature on parents of at risk or handicapped children. Parents were referred for counseling to the parent counselor either by the hospital medical staff or social service staff, or through self-referral. The counseling approach was that of crisis intervention and included a description by the counselor of the causes of at-risk birth. Frequent visits by the parent to the NICU were encouraged to foster a realistic appraisal of the child's

PAGE 21

condition and prognosis through questions to medical staff and project staff. Referrals to appropriate community mental health agencies were made when client problems were deemed beyond the scope of the parent counselor. The encouragement of mother-infant bonding and family-infant attachments. Relevant information was made available with respect to what might facilitate bonding and attachment in the NICU environment. Infant behaviors and responses were sometimes explored through Brazelton Neonatal Behavioral Assessment Scale type assessments (Brazelton, 1973a) administered to the infant periodically with the mother present. Once infant responses were documented, suggestions were made to parents on how to facilitate attachment. The provision of instruction to parents on in-hospital interventions, once the infant's condition permitted. The content of this instruction was covered by members of the NICU staff that is comprised of physicians, nurses, respiratory therapists, occupational therapists, a parent counselor

PAGE 22

-10and two infant educators. The instruction was based primarily on the constructs inherent in the Brazelton Neonatal Behavioral Assessment Scale. Interventions included improving the visual, auditory, tactile and kinesthetic environment for the infant to encourage more normal growth and development and to help minimize the effects of prolonged hospitalization. Examples of intervention plans and logs are included in Appendix C. The provision of discharge teaching, the goal of which was to facilitate a smooth transition from the hospital to the home environment for both the mother and the infant. Instruction for parents about the services available for themselves and their infants in their home community. The provision of post-discharge home visits for those infants who met NEO-PIE criteria and who were determined to be developmentally at risk by their doctor. These visits were made by one of the two parent/ infant educators who were introduced to

PAGE 23

-11that family while the infant was hospitalized. These visits were made at approximately one week post-discharge and weekly thereafter until the infant was at least six months adjusted age (corrected for prematurity). The purpose of these visits was to aid the family in providing an environment which would maximize the infant's developmental potential and to help insure that the family and the infant had made a satisfactory adjustment in all areas.

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CHAPTER II REVIEW OF THE LITERATURE Need for the Study The need for early intervention seems to have been established according to the literature. However, the worth of specific types is still being questioned. Among those types of early intervention programs still in their infancy are instruction and support for mothers of infants admitted to a neonatal intensive care unit. Since the art of neonatal interventions is relatively new and since the NICU at ORMC had already established a model of intervention which was being refined, it was proposed that a descriptive study of this type of intervention would serve to add to the body of knowledge. Once the program variables were described and changes in maternal knowledge, coping skills, and perceptions of their infants were documented, several possibilities could result: the program itself could be improved; others could either choose to implement or reject all or part of the model based upon this documentation; and true or quasi-experimental designs could be generated from one or more of the variables described. -12-

PAGE 25

-13The Effects of At-Risk Birth on Infant Development Over the past twenty years there has been an effort by researchers to study the elements in inf ant-careg iver interaction and to understand how the relationship between the caregiver and the infant affects later child development. These studies have shown that early interaction between parent and infant affects the skill development of the child both immediately and in later life (Yarrow, 1964; Lewis & Goldberg, 1969; Ainsworth & Bell, 1973; Stern, 1974; and Rubenstein & Pederson, 1972). A study by Martin (1978) showed the premature infant to be less responsive when compared to a full-term infant at the newborn period when matched for conceptual age. Another study at the University of Washington (Barnard, 1979) showed that the preterm infant at one and four months of age (corrected) is less alert and responsive than his full-term counterpart. In this same study, observation of parenting behaviors showed that, at one and four months, there were no differences in the preterm and term mothers' involvement and responsiveness with the child. However, by eight months, the parents of the premature infant were less responsive to their infants' cues, whereas by this time, the preterm and teimi infants were showing no differences in responsiveness to their environment.

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-14Cognitive and affective development of normal versus preterm infants has also been investigated by researchers. A study through middle childhood suggests that, although children born prematurely have normal 10 scores, their scores are within the lower end of the normal distribution (Caputo, Goldstein, & Taub, 1979). Studies of preterm infants by Field (1977) and Sigman and Parmelee (1977) have reported difficult early mother-infant interactions as well as correlations between these difficult early relationships and later deficits in cognitive performance. A study by Klaus, Jerauld, Kreger, McAlpine, Steffa and Kennell (1972) showed that mothers who were encouraged to have extended physical contact with their infants immediately following the birth of their normal full-term infants were more reluctant to leave their infants with someone else, usually stood and watched during examinations, showed greater soothing behavior, and engaged in significantly more eye-to-eye contact and fondling. This study showed that simple modification of care shortly after delivery may alter subsequent internal behavior for the mother and improve the emotional outlook for the infant. The applicability of this research to at-risk infants was shown in subsequent studies by Klaus and Kennel (1970). Problems of Adjusting to High Risk Infants Pamela Grant (1978), when discussing the many psychosocial needs of families of high risk infants, has stated:

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-15"Many parents of newborns requiring intensive care report a variety of emotional difficulties which may interfere with their relationship with the infant and disrupt the family's functioning" (p. 92). The manner in which parents work with their feelings and undertake these tasks, Grant continues, will, to some degree, determine a healthy or unhealthy outcome for the child and the family: . . . early events along with the subsequent decision to transfer an infant to a regional medical center initiate parents into a crisis period. Throughout this period, the individual parents struggle to understand the events they encounter. Each individual's and family's repertoire of life experiences is called upon as they attempt to make sense of what they are undergoing. The family's perception of the event ... is critical to their ability to realistically perceive their child's medical condition, (p. 92) It is exceedingly difficult for parents experiencing these complex emotions to objectively integrate medical information in understanding their infant's condition and needs. If parents have not reached ... mastery, a distorted view of the child's condition and needs may be evidenced in the parental relationship, (p. 94) Communication within the health care system is critical to the family's perception of their infant's medical status and needs. Communication must support the attachment process by emphasizing the humanness and individuality of the infant, (p. 94) The Effect of Premature Birth on Maternal Coping Skills In research often cited in the literature, Caplan, Mason and Kaplan (1965) identified four tasks a mother of a

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-16premature infant must face. First, the mother must prepare for possible loss (anticipatory grief). Second, she must acknowledge and face maternal failure to deliver a full-term infant. Third, she must resume the process of relating to the infant. Fourth, she must learn how a premature infant differs from a full-term infant and understand his/her special needs. The abnormal separation of the mother from the infant has been shown to affect the mother's ability to attach to her infant. Denial of early mother-infant interaction can have a negative effect on maternal self-confidence, resulting in later disorders of mothering. These include child battering and maternal influence on f ailure-to-thri ve syndrome (Farnaroff & Kennel, 1972; Seashore, Leifer, Barnett & Leiderman, 1973). Leonard, Rhymes and Solnit (1966) found a relationship between f ailure-to-thrive syndrome and emotional deprivation in very young children. Marked deficiencies appeared in the mother-infant dyad. These mothers expressed feelings of inadequacy and appeared incompetent in terras of dealing with the feeding and other activities of their infants. The researchers also observed that developmental characteristics of the infants may also have contributed to the mother-child difficulties. "Thus each infant and mother contributed reciprocally to the other's failure to thrive as well as the faulty relationship between them" (p. 609).

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-17Hothers' Perceptions Researchers have found that the early perceptions of a mother toward her infant can set the stage for future relationships by serving as a framework for the beginning of positive nurturing interactions or for the start of inappropriate and conflictual interpersonal interactions (Erikson, 1976). Newborn infants with problems severe enough to warrant admission to an intensive care unit are likely to be perceived by their mothers as deficient or below average; hence, their risks may be amplified by their mothers' negative perceptions of them. Neonatal intensive care units typically have not emphasized instruction and support for their mothers (Klaus & Kennel, 1970). The need for early detection of and attention to potential problems of infants before or at the beginning of their development has been recognized (Broussard & Hartner, 1971). However, this need for instruction of their mothers is less well recognized. From her years of experience in observing mothers and children, Elsie Broussard developed a conviction that is supported by a steadily growing body of empirical evidence. This conviction is that infants who are not perceived by their mothers as being better than average are at a much higher risk for subsequent emotional difficulty than infants who are viewed as better than average.

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-18Broussard also held the view that, for a short period of time after the birth of an infant, the development of optimal mother interactions is vulnerable because of the lasting influence the mother's initial perceptions have on her subsequent parenting of her child. This viewpoint is shared by Klaus and Kennel (1970). As early as birth, an acquaintance process between a mother and her infant begins. This process of acquaintance forms the basis of subsequent interpersonal behaviors between mother and child. The ways that the mother interacts with her infant will be influenced by her perception of the infant's appearance and behaviors. The infant's behavior will then be influenced by the way the mother interacts and handles the infant (Broussard, E. R. Personal Communication to Marcene Erikson, February, 1976). In Broussard 's research, when developing her Neonatal Perception Inventory, she found that mothers who perceived their one-month-old infants as better than average tended to have better self-esteem. Those mothers with a poorer selfesteem tended not to view their infants or their infants' health as better than average, although no differences existed between the groups with regard to the reported actual illnesses. The low self-esteem mothers also tended to lack the little bit of enthusiasm needed to rate their own health as being excellent (Broussard & Hartner, 1971).

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-19Finally, Broussard's research on her Neonatal Perception Inventory found a significant correlation between the mother's perception of her infant as measured by the Neonatal Perception Inventory at one month and the need for therapeutic intervention at age 4-1/2. Of infants rated by mothers at one month as below average, 66% needed intervention by age 4-1/2 as compared to 20.4% needing intervention in the average or above average group. The Need for Instruction and Support for Mothers of High Risk Infants The studies reviewed thus far and other studies (Moss & Kagan, 1958; Scarr-Salapatek & Williams, 1973; Powell, 1974) indicate the crucial importance of parent involvement with any infant, but especially the high risk infant. The goal of intervention with high risk infants should be to improve the mother's self-concept and confidence and to facilitate immediate and on-going mother-infant interaction, thereby improving maternal perceptions of the infant. Through interventions with these goals in mind, the developmental outlook of the high risk infant should be significantly improved. Studies on early intervention in neonatal intensive care units have largely been focused on multisensory stimulation with the infants themselves. These studies have had conflicting results. Generally, each of the studies on intervention with mothers has focused separately on one or another of three

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-20aspects of maternal support: reducing mothers' separation from their at-risk infants (Barnett, Leiderman, Grobstein & Klaus, 1970? Klaus & Kennel, 1970); helping parents to cope with the birth of an at-risk infant (Waisbren, 1980); providing demonstrations of preterm infant or at-risk infant behaviors (Widmayer & Field, 1981). There has yet to be a study which documents the changing needs that mothers have for support and instruction during the entire time their infants are patients in a neonatal intensive care unit.

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CHAPTER III DESIGN OF THE STUDY The NEO-PIE model for instruction and support was conceived as an attempt to help mothers meet four objectives. The designation of these objectives resulted from a review of the literature. Each objective represented a milestone that studies in the literature cite as important for the mother of an at-risk infant to obtain to begin to be an effective parent. The effects of early instruction and support were measured by changes in (Da mother's understanding of her infant's condition and care; (2) a mother's ability to cope with the crisis of the birth of an at-risk infant; (3) a mother's attachment to her infant judged by her perception of that infant; and (4) a mother's understanding of newborn and premature behavior and needs. The effectiveness of the model was documented by looking at maternal change in these four areas between the time the infant was admitted to the ORMC-NICU and one month postdischarge. The mothers included in the intervention group represented a cross-section of the types of mothers normally encountered in an NICU. -21-

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-22In addition to the main purposes of measuring the effectiveness of the model of instruction and support established by the NEO-PIE model, this study also generated data on the relationship between the infant's birthweight, the family's financial status, and the mother's need for intervention. Sample and Procedure All mothers whose infants met the NEO-PIE criteria and who agreed to be a part of this study responded to the instruments. The study commenced as soon as possible after the NEO-PIE staff began accepting clients and terminated when preand post-evaluation data were collected on thirty subjects. The mother was asked to fill out the initial questionnaires as soon as her medical condition permitted. An interviewer was provided for those mothers who did not understand the task. The person interviewing was not one of the NEO-PIE staff. All of the pre-evaluation instruments were administered at this time. The answer sheets were coded to insure that the NEO-PIE staff were blind to the results, as well as to protect the confidentiality of the mothers. At one month post-discharge, the post-discharge questionnaires were sent to those mothers who submitted pre-evaluation questionnaires. Help was again offered

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-23to those mothers who did not understand the task. Each answer sheet was again coded with the same code as the initial answer sheet. Demographic and medical information on the mother and infant was collected over the life of the study. The mother's visits and calls were also documented as an additional assessment of the mother's attachment to her infant. Data Collection Four questionnaires were used in this study. Three of these questionnaires were designed for the purposes of this study as no satisfactory ones were available in the literature. The questionnaires covering Parent Understanding of Infant Condition and Care, Parent Coping Skills, and Parent Understanding of Newborn and Premature Behavior and Needs were original to this study. The fourth questionnaire, which covered Mother's Perceptions of Her Infant, was the Broussard Neonatal Perception Inventory (Broussard & Hartner, 1971). The Neonatal Perception Inventory (NPI) had been used in numerous other studies to document maternalinfant attachment. The instruments original to this study were constructed using test mapping. For each objective to be measured, specific knowledge needed to be gained to complete that

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-24objective was defined. The definition of these areas was gleaned from the literature, and a standard was designated for each objective: what would be important for the mother to understand about her child's development to be a competent parent? Once the areas of knowledge were defined, questions were generated. To insure objectivity and ease of scoring, true/false questions were chosen for the questionnaire measuring increases in understanding of an infant's behavior and needs. The questionnaires were given to five people for review. Three of these people were professionals in the area of perinatal care. They reviewed the instruments for content validity. The other two people asked to review these instruments were mothers of at-risk infants. They were asked to comment on the readability and relevance of the questionnaires. Objective I; Parent Understanding of the Infant's Condition and Care The questionnaire on Parent U nderstanding of Infant Condition and Care (Page 137 in the Appendix) was designed to document whether changes in mother's knowledge between the time the infant was admitted and one month postdischarge came about as a result of staff intervention. A questionnaire using Likert-type responses administered at one month post-discharge only was selected

PAGE 37

-25as the most effective way to measure whether changes in a mother's understanding of her infant's condition and care came about as a result of hospital services. A preevaluation would serve no purpose. What was being measured with this instrument was how helpful the mother thought the hospital staff was in increasing her understanding. It was felt this objective could only be measured retrospectively. Objective II; Parent Coping Scale Questions for the Parent Coping Scale were adaptations of questions used in the Benf ield-Leib Father-Mother Discharge Questionnaire (Benfield & Leib, 1974) used at the Children's Hospital of Akron, Ohio. Permission to adapt this scale was secured from Dr. Benfield. The Benf ield-Lieb Questionnaire reflects the grieving process parents go through when they give birth to a premature or sick infant. The pre-evaluation questions (Part "A") were designed to look at how the mother was coping at the time the baby was admitted. The mother was again asked to answer the "A" questions at one month post-discharge to ascertain if there were any changes in the way she coped between the time the baby was admitted and discharged. In addition, on the post-evaluation, a second part (Part "B") asked the mother to evaluate how helpful she found the NICU staff to be in the areas where she was having difficulty. The term "NICU staff" was used because it was difficult for parents to

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-26separate medical staff from intervention staff and often their functions overlapped. Answers for the questions on this instrument were placed on a Likert-type scale to make scoring and analysis relatively simple. The initial administration of the Parent Coping Scale provided baseline data on how the mother was coping with the crisis of a sick infant. The one month post-discharge administration of the questionnaire documented whether changes in the mother's coping took place between the infant's admission and discharge and whether the mother felt that staff intervention helped her to better cope. Reliability for Part "A" of this scale was determined using Coefficient Alpha. Objective III; Neonatal Perception Invent ory and Degree of Bother Inventory The already existing Neonatal Perception Inventory was used to document changes in the mother's perception of her infant over time. Permission to use this instrument was requested from Dr. Broussard. This instrument had the mother initially rate how she expected her infant to function in relation to an average baby and later rate how she thought her baby was functioning in relation to the average baby. The first and second forms of this instrument varied in that the first form asked the mother to make a prediction regarding how she expected her baby to be in relation to an average baby, and the second form asked how

PAGE 39

-27the mother thought her baby rated in relation to the average baby after she had had the baby home for one month. The second form also contained a Degree of Bother Inventory which asked the mother to assess how much bother her infant was in five areas and provided room for mothers to report other kinds of bother. In essence, this instrument was used as an indicator of early signs of the mother's attachment to her infant, which is so important to the child's maximum development. Objective IV; Parent Understanding of Infant's Behavior and Needs The instrument measuring Parent Understanding of Infant Behavior and Needs was designed to document the changes in a mother's awareness as a result of instruction provided by the project staff between admission and one month postdischarge. Questions for this instrument were based on the concepts inherent in the Brazelton Neonatal Behavioral Assessment Scale (Brazelton, 1973a). The staff's developmental intervention philosophy is based on Brazelton's perspective. The questions were true/false in nature, and the same questions were used in both the preand postevaluations. Kuder-Richardson Formula 20 was used to demonstrate the reliability of this instrument. All of the questionnaires original to this study are included in the Appendix. The Neonatal Perception Inventory

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-28and the Benf ield-Leib Father-Mother Dis charge Questionnaire are available from the authors. Method of Analysis This study attempted to document the effectiveness of a program which had been instituted in a field setting. The nature of the task dictated that the results of the analysis be reported descriptively. Several aspects of this program were considered and reported in addition to the overall effectiveness of the program model. Each hypothesis was tested at the 0.05 level of confidence. The information which has been described and the questions which were addressed are as follows. Background Data The range in background of the entire sample of mothers has been described in terms of variables listed on Table 3-1. The range in background of mothers whose infants fell into the <. 1500 gram group has also been described separately from that of the mothers whose infants fell into the > 1500 gram category. These two groups of mothers were compared, using One Way Analysis of Variance and Chi Square Contingency Tests, to see if a significant difference existed in the various background variables between these two groups of mothers. Hypothesis I: There will be no significant difference in background

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-29variables between mothers of infants weighing £ 1500 grams and mothers of infants weighing > 1500 grams. The background of the entire sample of infants has also been displayed according to the variables listed on Table 3-1. The variable ranges for each group of infants, <. 1500 grams and > 1500 grams, were described and then compared. Even though Hypothesis III was stated in the null for statistical purposes, it was expected that there would be a significant difference between these two groups on most of the variables. One Way Analysis of Variance was used. Hypothesis II: There will be no significant difference in background variables between infants weighing £ 1500 grams and infants weighing > 1500 grams. The range of background variables was also analyzed to ascertain if mothers who qualified for the CMS Perinatal Grant, which underwrote the baby's hospital costs, differed significantly from mothers who did not qualify. One Way Analysis of Variance was used. Hypothesis III: There will be no significant difference in background variables between mothers whose

PAGE 42

-30infants qualify for the CMS Perinatal Grant and mothers whose infants do not. The background variables of infants who were under the Perinatal Grant were compared to the background of infants not under the Grant, using One Way Analysis of Variance. Hypothesis IV: There will be no significant difference in background variables between infants whose medical expenses are covered by the CMS Perinatal Grant and infants . whose expenses are not covered, , Oblectives The effectiveness of the efforts toward each intervention objective was analyzed three different ways: (1) by describing the effectiveness of the intervention efforts on the entire sample; (2) by ascertaining if the intervention effects differed, according to the size of the infant; and (3) by ascertaining if the intervention efforts differed based on whether or not the family qualified for the CMS Perinatal Grant. Objective I ; Parent Understanding of Infant's Condition and Care An item by item analysis of the questionnaire was conducted using the entire sample's responses to evaluate the areas where NICU staff was most effective in helping the mother understand her infant's

PAGE 43

-31condition and care. The mean responses for each item are reported. Objective I data were also analyzed item by item to ascertain if a difference in intervention effects existed between mothers of infants weighing <. 1500 grams and mothers of infants weighing > 1500 grams. Differential effects of intervention were also analyzed on the Grant vs. No Grant mothers. Chi Square Contingency Tests were used in both comparisons. Hypothesis V: There will be no significant difference in intervention effects between mothers of infants weighing <^ 1500 grams and mothers of infants weighing > 1500 grams in the mother's understanding of the infant's condition and care. Hypothesis VI: There will be no significant difference in intervention effects between Grant and No Grant mothers in the mother's understanding of infant's condition and care. Objective II ; Parent Coping Scale (Part A) Changes between the preand post-evaluation responses were analyzed on an item by item basis for the

PAGE 44

-32entire sample. The question addressed was, "Does coping change across the time the infant is hospitalized?" The mean difference from preto postfor each item is displayed. Another question asked was whether mothers of infants weighing <_ 1500 grams coped differently during their infant's hospitalization than mothers of infants weighing > 1500 grams. The same question was posed about mothers who qualified for the CMS Perinatal Grant vs. mothers who did not. One Way Analysis of Variance and T-tests for Related Samples were used. Hypothesis VII: There will be no significant changes in coping during the infant's hospitalization between mothers whose infants are in the < 1500 gram group and the > 1500 gram group. Hypothesis VIII: There will be no significant changes in coping during the infant's hospitalization between mothers whose infants are in the No Grant group and mothers whose infants are in the Grant group.

PAGE 45

-33Obiective II ; Parent Coping Scale (Part B) How helpful the entire sample perceived the NICU staff to be with each aspect of coping was analyzed on an item by item basis. The mean responses for each item are d isplayed. Item by item responses from the mothers of infants in each weight category as well as those in the Grant vs. No Grant category were compared to see if significant differences existed in perceptions of the helpfulness of staff. Descriptive statistics and Chi Square Contingency Tests were used for each comparison. Hypothesis IX: There will be no significant difference between mothers of infants weighing _< 1500 grams and mothers of infants weighing > 1500 grams in mother's perception of helpfulness of staff with coping. Hypothesis X: There will be no significant difference between Grant and No Grant mothers in mother's perception of helpfulness of staff with coping. Objective III ; Neonatal Perception Inventory (NPI) Mean scores for the Average Baby and Your Baby questionnaires are reported for both the preand the

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-3Apost-evaluation for the entire sample. Mean changes which took place in the entire sample's perception of their baby as compared to the average baby from admission to discharge have also been analyzed. The questions which were asked were, "Did the sample's perception of their baby as compared to their perception of the average baby change from admission to discharge?" and "Was this change favorable?" The pre-evaluation scores for the < 1500 gram group and the > 1500 gram group of mothers on the NPI were compared to see if a significant difference existed in a mother's perception of her infant based on the infant's weight. This same analysis was done for the Grant vs. No Grant mothers. Both comparisons used One Way Analysis of Variance. The post-evaluation NPI questionnaires were analyzed in the same manner as the pre-evaluation NPI. Finally, pre-evaluation difference scores were compared to post-evaluation difference scores for the _< 1500 gram and > 1500 gram groups and the Grant vs. No Grant groups to ascertain if there were significant changes in perception from admission to discharge depending on the infant's weight or whether or not his family qualified for the CMS Perinatal Grant. T-tests for Related Samples were used to make these comparisons.

PAGE 47

-35Hypothesis XI: On the preevaluation, the difference scores on the NPI for mothers of infants who weigh £ 1500 grams will not be significantly different from those of mothers of infants who weigh > 1500 grams. Hypothesis XII: On the preevaluation, the difference scores on the NPI for Grant mothers will not be significantly different from those of the No Grant mothers. Hypothesis XIII: On the postevaluation, the difference scores on the NPI for mothers of infants who weigh ± 1500 grams will not be significantly different from those of mothers of infants who weigh > 1500 grams. Hypothesis XIV: On the postevaluation, the difference scores on the NPI for Grant mothers will not be significantly different from those of the No Grant mothers.

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-36Hypothesis XV: There will be no significant change in the difference scores on the NPI from the preto the post-evaluation between mothers of infants weighing < 1500 grams and mothers of infants weighing > 1500 grams . » Hypothesis XVI: There will be no significant change in the difference scores on the NPI from the preto the post-evaluation between Grant and No Grant mothers. Objective III : Degree of Bother Inventory . The Degree of Bother Inventory was analyzed to ascertain how bothersome the entire sample perceived their infant to be at one month post-discharge and whether a difference existed in the perception of bother, depending on which group the mother belonged to. Means were used to describe the entire group, and One Way Analysis of Variance was used to compare the groups. Hypothesis XVII: There will be no significant difference in how bothersome the infant is perceived to be at one month post-discharge between mothers of infants weighing

PAGE 49

-37< 1500 grams and mothers of infants weighing > 1500 grams. Hypothesis XVIII: There will be no significant difference in how bothersome the infant is perceived to be at one month post-discharge between mothers in the Grant and No Grant groups. Objective IV ; Parent Understanding of the Infant' s Behavior and Needs . The average number of correct responses on the preand post-evaluation tests was reported for the entire sample, and a comparison was made between the preand post-tests to document any changes for the group as a whole. In addition, the pre-test and the post-test were analyzed separately to see if there were significant differences in the number correct between mothers whose infants were in the _< 1500 gram group and mothers whose infants were in the > 1500 gram group. This same analysis was done for Grant vs. No Grant mothers. One Way Analysis of Variance was used for both comparisons. Finally, data from each group of mothers were analyzed using T-tests for Related Samples to see if there were significant differences in the number correct from the pre-test to the post-test.

PAGE 50

. -38: , Hypothesis XIX: There will be no significant differences in the number correct on the pre-evaluation test of a mother's understanding of her infant's behavior and needs between mothers of infants weighing < 1500 grams and mothers of infants weighing > 1500 grams. Hypothesis XX: There will be no significant differences in the number correct on the pre-evaluation test of a mother's understanding of her infant's behavior and needs between mothers in the Grant and No Grant groups. Hypothesis XXI: There will be no significant differences in the number correct on the postevaluation test of a mother's understanding of her infant's behavior and needs between mothers of infants weighing <_ 1500 grams and mothers of infants weighing > 1500 grams. Hypothesis XXII: There will be no significant differences in the

PAGE 51

-39number correct on the postevaluation test of a mother's understanding of her infant's behavior and needs between mothers in the Grant and No Grant groups. Hypothesis XXIII: There will be no significant change from the preevaluation to the post-evaluation in the number correct on the test of a mother's understanding of her , infant's behavior needs between mothers of infants weighing < 1500 grams and mothers of infants weighing > 1500 grams. Hypothesis XXIV: There will be no significant change from the preevaluation to the post-evaluation in the number correct on the test of a mother's understanding of her infant's behavior needs between Grant and No Grant mothers. Limitations This was a Pre-experimental Pre-Test/ Post-Test Design (Campbell and Stanley, 1963) with comparisons made between subgroups. This study is subject to the same

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-40internal and external validity problems as any design of this type. Aspects of the study measuring maternal satisfactions with services provided by the staff fit a Pre-Experimental One-Shot Case Study Design (Campbell and Stanley, 1963). These measures are subject to the same sources of internal and external invalidity as any design of this type. The sample size was small. These results might have been more definitive had the sample size been bigger. Participants in this study were volunteers. They may not represent the total population to whom services are available. Instruments used in this study may need refinement to increase reliability and construct validity. In using the structured questionnaire format to obtain the measures, the subjects may have been forced to choose responses which did not really represent their attitudes. The questions selected could have been misinterpreted by some of the respondents.

PAGE 53

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PAGE 55

-43a 4 1 5 m : Li 2ii m a. iJ 'J 3 — > > = tr. i -< >. u 5 I 1 13 — > It! )) i. m X X I u -< III 3 — p U X u. 0 10 iS (0 m

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CHAPTER IV RESULTS The purpose of this study was to evaluate the effectiveness of a system of instruction and support which had been designed for mothers of infants admitted to a neonatal intensive care unit. Considered were the overall effectiveness of the program model as well as its effects on certain members of the population being served. This chapter presents the analysis of the results of this study for each of the original proposed hypotheses. Each hypothesis was tested at the .05 level of confidence. Depending on the nature of the data, each hypothesis was tested using One Way Analysis of Variance, Chi Square Contingency Tests or T-test for Related Samples. It was decided that percentages, rather than proportions, would be used to facilitate interpretation of the Chi Square Contingency Tests. The size of the subgroups being compared remained constant, making this type of reporting possible. Background Data Entire Sample of Mothers in Study Background variables for the entire sample of thirty mothers, including demographic data, delivery information -44-

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-45and psychosocial variables, are described in the Appendix (Table A-1). The background variables of the infants are presented in Table A-2 in the Appendix. Included are demographic data and admission diagnoses. This sample of infants is supposed to represent admissions to ORMC's NICU between September 18, 1982, and March 3, 1983, who were considered high risk. During that time period, 195 infants were admitted to the NICU. One hundred fifteen infants were deemed high risk by the study criteria, and of these, 27 infants expired. Seventy mothers of high risk infants originally agreed to participate in the study, and 30 mothers completed both the preand post-evaluations. When the entire sample is broken down by weight, 16 infants fall into the £ 1500 gram group and 14 infants fall into the > 1500 gram group. If the sample is subdivided into the Grant and No Grant categories, 19 infants fall into the Grant group while 11 are No Grant. Background Data by Weight Table 4-1 breaks down the background variables of the mothers into two categories and compares mothers of infants who weighed £ 1500 grams with mothers of infants weighing > 1500 grams. Hypothesis I: There will be no significant difference in background variables between mothers of infants

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-46TABLE 4-1 Background Variables of Mothers With Infants Weighing £ 1500 Grams and > 1500 Grams Infants Infants < 1500 qms > 1500 gms Total in each group 16 14 Demographic Data Mean age 25 yrs. 28 yrs. Marital status Married 12 9 Single 3 2 Separated 1 1 Divorced 1 1 White 11 (69%) 11 (79%) Black 4 (25%) 2 (14%) Other 1(6%) 1(7%) Mean educational level 12.25 yrs. 12.71 yrs. Delivery Data Mean Gravida Mean Para Mean Abortions Caesarean sections Premature rupture of membranes Premature labor Placenta Previa or Abrupto Other maternal risk factors 1.9 1.8 1.2 8 (50%) (44%) (31%) (19%) (50%) 3.1 1.8 1.1 4 2 1 2 3 (29%) (14%) ( 7%) (14%) (21%) Psychosocial Support person present for 15 (94%) 11 (77%) delivery Mean prenatal care visits 8 11 Previous child in NICU 5 1 Mean calls to NICU/week 9 15 Mean visits to NICU/week 5 8 Qualified for CMS Grant 10 (62%) 9 (64%)

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-47weighing _< 1500 grams and mothers of infants weighing > 1500 grams. One Way Analysis of Variance and Chi Square Contingency Tests were used to compare these two groups of mothers. Significant differences were found in only one area, the number of calls made per week to inquire about the baby (Table 4-2). Mothers of the larger infants averaged calling 15.8 times per week (slightly more than twice per day), whereas the mothers of the smaller babies averaged 9.9 times per week (a little over one call per day). Demographic and admitting information broken down and compared by weight of the infant is included in Table 4-3. Hypothesis II: There will be no significant difference in background variables between infants weighing < 1500 grams and infants weighing > 1500 grams. The two weight groups of infants were compared using One Way Analysis of Variance. Significant differences (Table 4-4) were found only in those areas directly related to the size of the infant including birth weight, gestational age, and some at risk criteria. Low birth weight infants are admitted to the NICU for problems related to prematurity. Larger infants are usually admitted because they are in distress before or during birth. When an infant

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-48TABLE 4-2 Significant Differences Between Mothers of Infants Weighing < 1500 Grams and > 1500 Grams Number of calls to the NICU per week* Mean S.D. < 1500 grams 9.9 4.5 > 1500 grams 15.8 9.3 *All comparisons were made Variance. D.F. F. Significance 1.27 5.0 .034 using One Way Analysis of is distressed, he may have a bowel movement (meconium) in utero and/or may be born evidencing one or more of the following: poor color, poor respiratory effort, a low heart rate, poor muscle tone, no cry. The infant is assessed in these five areas at one and five minutes of life and assigned a score called an APGAR (So named after Virginia Apgar. Each letter is assigned a name to remind delivery personnel to assess that area: A — appearance; P — pulse; G — grimmace; A — activity; R-respirat ion ) . The infants in the larger weight category, in addition to being significantly larger (2354.1 grams vs. 1076.2 grams) and older (36.7 weeks vs. 30.7 week), had significantly lower one minute APGAR scores (3.4 vs. 5.3) and a higher incidence of meconium staining (43% to 0%). A significantly greater percentage of the higher weight babies evidenced clinical

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-49TABLE 4-3 Background Variables of Infants in Each Weight Category < 1500 gms Demographic Data Males Females Mean hospital stay Transferred prior to discharge Mean gestational age Size for gestational age Small Average Large Mean birth weight Mean birth length Risk Factors Mean 1 minute APGAR Mean 5 minute APGAR Clinically asphyxiated Intraventricular hemorrhage Congenital anamoly Very premature Premature Breech Meconium stained 9 (56%) 7 (44%) 58 days 3 (19%) 30.7 wks. 7 (44%) 9 (56%) 0 ( 0%) 1076 gms 37 cm 5.3 6.7 7 3 0 6 7 2 0 (44%) (19%) (12%) > 15 00 gms 4 (28%) 10 (71%) 41 days 2 (14%) 36.7 wks, 4 (31%) 8 (65%) 1 ( 8%) 2354 gms 43 cm 3.4 5.6 13 (93%) 3 (21%) (14%) 2 0 3 1 6 (17%) (43%) Major Admitting Diagnosis {> 25% of Sample) Respiratory Distress Syndrome Pneumonia Hyperbilirubinemia Hypotens ion/Shock Hypocalcemia Sepsis, Septisemia, R/Osepsis Hypovolemia Other 2 5 6 6 4 9 3 9 (12%) (31%) (37%) (37%) (25%) (56%) (19%) (56%) 2 2 2 4 1 9 4 3 (14%) (14%) (14%) (29%) ( 7%) (64%) (29%) (21%)

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-50TABLE 4-4 _< 1500 grains > 1500 grams Significant Differences Between Infants Weighing < 1500 Grams and > 1500 Grams One Minute APGAR Score One Way Analysis of Variance Mean S.D. D.F. F. 5.37 2.6 1.28 5.42 3.35 2.0 Asphyxia Chi Square Contingency Test Significance .027 Risk Factor _< 1500 gr > 1500 gr Row Totals Not asphyxiated _< 9 56% of 1500 gr group > 1 7% of 1500 gr group 10 Asphyx iated _< 7 44% of 1500 gr group > 13 93% of 1500 gr group 20 Column Totals 16 14 30 2 X 6.04 DF 1 P .014 _< 1500 grams > 1500 grams Gestational Age One Way Analysis of Variance Mean S.D. D.F. F. 30.7 2.1 1.28 34.2 36.7 3.4 Significance .000

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51Table 4-4 — continued Birth Weight One Way Analysis of Variance Mean S.D. D.F. F. < 1500 grains 1076. 2 272.3 1.28 38.8 > 1500 grams 2354.1 769.2 Significance .000 Risk Facto r No Meconium Meconium Column Totals 2 X 6.10 Meconium at Birth Chi Square Contingency Test < 1500 gr > 1500 gr 16 100% of < 1500 gr group 8 57% of > 1500 gr group 0 0% of < 1500 gr group 6 43% of > 1500 gr group 16 DF 1 14 Row Totals 24 P .013 30

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-52signs of asphyxia (93% vs. 44%). The differences between the two compared groups were evident only in the areas expected. In all other areas, the groups appear to be approximately the same. Background Data by Grant The background variables were also analyzed to ascertain if differences existed between mothers whose infants did and mothers whose infants did not qualify for a grant which underwrote the baby's hospital costs (Table 4-5). Hypotheses III: There will be no significant difference in background variables between mothers whose babies qualify for the CMS Perinatal Grant and mothers whose babies do not. The Grant and No Grant group of mothers were found to be different with respect to mean age and mean level of education (Table 4-6). Mothers of the No Grant babies were significantly older, averaging 28 years, while mothers in the Grant group averaged 24 years. No Grant mothers, on the average, completed 14.2 years of schooling while Grant mothers averaged 11.5 years. All other background variables were essentially the same. One Way Analysis of Variance and Chi Square Contingency Tests were used to compare the two groups.

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-53-^ TABLE 4-5 Background Variables of Mothers Whose Infants Did and Did Not Qualify for the CMS Grant No Grant Grant Total in each category 11 Mean age 28 yrs. Marital Status Married 11 (100%) Single 0 Separated 0 Divorced 0 Race White 9 (82%) Black 0 Other 2 (18%) Mean educational 14.2 yrs. level 19 24 yrs. 10 (53%) 5 (26%) (10%) (10%) 2 2 13 (68%) 6 (32%) 0 11,5 yrs. Delivery Data Mean Gravida 2.4 Mean Para 1.5 Mean Abortions 1.2 Caesarean sections 4 (36%) Premature rupture of 5 (45%) membranes Premature labor 3 (27%) Placenta Previa or Abrupto 3 (27%) Other maternal risk factors 2 (18%) 2.2 2.0 1.2 8 (42%) 4 (21%) 3 (16%) 4 (21%) 9 (47%) Psychosocial Support person present 11 (100%) for delivery Mean prenatal care visits 8 Previous child in NICU 4 ( 36%) Mean calls to NICU/week 13 Mean visits to NICU/week 8 15 (79%) 10.8 2 (10%) 12 6

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-54TABLE 4-6 Significant Differences Between Mothers Whose Infants Did and Did Not Qualify for the CMS Grant Maternal Age * Mean S.D. D.F. F. Significance No Grant 28.6 2.7 1.28 5.47 .027 Grant 24.8 4.9 Mean Educational Level * Mean S.D. D.F. F. Significance No Grant 14.2 2.8 1.28 12.09 .002 Grant 11.5 1.4 *All comparisons were made using One Way Analysis of Variance. The background variables of the infants in the Grant and No Grant group were also compared using One Way Analysis of Variance (Table 4-7). Hypothesis IV: There will be no significant difference in background variables between infants whose medical expenses are covered by the CMS Perinatal Grant and infants whose expenses were not covered. No significant differences were found between these two groups of infants. They can be considered essentially al ike.

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-55TABLE 4-7 Background Variables of inrancs wno u lu anu ulu Not Qualify for the CMS Grant No Grant Grant Demographic Data Males (64%) 10 (53%) Females 4 (36%) 9 (47%) Mean hospital stay 44 w ay o "i days Transferred prior to discharge 3 (27%) o M n a ^ Mean gestational age 33. 5 wks. * "? . 5 wks. Size for gestational age Small 6 (60%) D I ofi ft \ I zo « ; Average 4 (40%) 1 t Ij / CO g. \ t oo « } Large 0 1 Mean birth weight 1587 gms gms Mean birth length 36. 9 cm 41 . 9 cm Risk Factors Mean 1 minute APGAR 4 . 3 4 .5 Mean 5 minute APGAR 6. 1 6 .2 Clinically asphyxiated 8 V DO* ; Intraventricular hemorrhage 4 (36%) Z ( 1U% ) Congenital anamoly 1 ( 9%) 1(5%) Very premature 1 ( y% ; 5 (26% ) < 1500 gms 6 (54%) 10 ( 52%) > 1500 gms 5 (45%) 9 (47% ) Premature 5 (45%) 5 (26%) Breech Meconium stained 2 (18%) 4 (21%) Major Admitting Diagnosis (> 25% of Sample) Respiratory Distress Syndrome 2 (19%) 2 (10%) Meconium Aspiration Pneumonia 1 ( 9%) 2 (10%) Pneumonia 3 (27%) 4 (21%) Aspiration of Fluid or Blood 1 ( 9%) 1 ( 5%) Hyperbil irubinemia 1 ( 9%) 7 (37%) Apnea/Bradycardia 1 ( 9%) 2 (10%) Seizures 0 2 (10%) Hypotension/Shock 3 (27%) 7 (37%) Polycythemia 0 1 ( 5%) Hypocalcemia 1 ( 9%) 4 (21%) Sepsis or Suspected Sepsis 6 (54%) 12 (63%) Persistent Fetal Circulation 1 (10%) 1 { 5%) Hypovolemia 3 (27%) 4 (21%) Other 5 (45%) 9 (47%)

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-56Objectives An attempt was made to analyze the effectiveness of the NICU staff's efforts toward each intervention objective. Three questions were asked: (1) How effective were the interventions on the entire sample of thirty mothers? (2) Did the effects of the interventions differ according to the size of the infant? (3) Did the effects of the interventions differ based on whether or not the infant's family qualified for the CMS Perinatal Grant? Objective I Parent Understanding of the Infant's Condition and Care This questionnaire was given at one month postdischarge only. Its purpose was to ascertain how helpful the mother thought the NICU staff had been in helping her understand her infant's condition and care from the time of admission to discharge. It was designed to measure her satisfaction with the instructional and support services available to her. The mother was asked to respond on a Likert-type scale. Her choices ranged from very helpful to confusing. Other response choices available were did not receive this service and other . An item by item analysis of this instrument was conducted using Chi Square Contingency Tests. Table A-3 was generated from the Chi Square data and represents the relative effectiveness of each area the NICU staff attempts to address with the mother while her infant is a patient.

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-57Table A-3 shows the mean score for each item for the whole sample, what percent of the entire sample did not receive that particular service, what percent of the entire sample found this service to be very helpful or helpful, and finally, what percent of the subgroups (weight and grant) found each service to be very helpful or helpful. In every area, the staff was rated to be helpful or very helpful. Table 4-8 further breaks down how the staff was rated by the entire sample on the areas covered by Objective I. Shown are the services rated most highly and least highly, as well as areas where a significant percentage of the sample reported not receiving the service at all. The most highly rated areas appear to cluster around the services rendered at the time of the baby's admission. The staff seems to be adept at discussing the policies of the NICU and what is happening to the baby. The admission materials which include booklets about the NICU, prematurity, and stimulating the baby, as well as information on counseling services, appear to be well received by a majority of the sample. The conferences with the doctors and the emphasis placed on visiting the infant often also were perceived as very helpful. The two areas where the staff was least highly rated were in providing information about services in the hospital and in the community.

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-58TABLE 4-8 Parent Understanding of Infant's Condition and Care Results of Objective I for the Entire Sample Most Highly Rated Areas Mean Score ^ Explanations about baby's appearance and condition Admission materials Explanations on NICU visiting and phoning policy Conference with doctor Information on importance of visiting often Least Highly Rated Areas Information about services available in the hospital Information about services available in the community Reported Not Receiving This Service NEO-PIE Visits Information on services available in the community Being shown how to play with and stimulate baby Discharge materials Discharge teaching Information on services available in the hospital 3.7 3.6 3.6 3.6 3.6 2.9 2.9 Percent of Group Who Found Very Helpful or Helpful 87 93 90 80 73 57 40 Percent 86 53 43 24 21 20 * Response choices range from 4 (very helpful) to 1 (confusing). Other response choices included 0 (did not receive service) and 5 (other).

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-59There were six areas where large numbers of the sample reported they did not receive a particular service. The largest gap was found in Neonatal-Parent/Infant Education staff visits. Since home visits are only offered to those infants who are at the very highest risk for a developmental delay, not many of these families were asked to participate. This accounts for the high percentage of the sample not receiving this service. Fifty-three percent of the sample did not receive information on services available in the community, and forty-three percent were not shown how to play with and stimulate their baby. At discharge, 24 percent did not receive discharge materials, and 21 percent did not have discharge teaching. Finally, 20 percent of the sample said they did not receive information on services available in the hospital. The data from Objective I were analyzed to ascertain if differences in satisfactions existed between mothers of infants weighing < 1500 grams and mothers of infants weighing > 1500 grams. Hypothesis V: There will be no significant difference in intervention effects between mothers of infants weighing <^ 1500 grams and mothers of infants weighing > 1500 grams in mother's understanding of the infant's condition and care.

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-60I Objective I data was reanalyzed to compare mothers whose infants qualified for the CMS Perinatal Grant and mothers whose infants did not. Hypothesis VI: There will be no significant difference between Grant and No Grant mothers in mother's understanding of the infant's condition and care. Chi Square Contingency Tests were used to test Hypotheses V and VI. Table 4-9 displays the most highly rated areas by subgroups and Table 4-10 displays the least highly rated. The only significant difference found between subgroups was in the area of providing information on the importance of visiting the baby often (Table 4-11). Ninety-one percent of the No Grant mothers found this very helpful or helpful while only 84% of the Grant mothers perceived this as very helpful or helpful. Objective II Parent Coping Scale (Part A) The "A" part of this scale was administered to the mothers as soon as possible after her baby's admission to the hospital when her medical condition permitted. This same scale was administered at one month post-discharge with the mother being asked to rate how she coped during the baby's hospitalization (Table A-4). Each item on the scale contained a situation and the mother was asked to rate how much of a problem she thought the situation was. Four

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-61TABLE 4-9 Objective I Areas Most Highly Rated by Each Subgroup Subgroup Area Percent <_ 1500 gm Information packet 88 ~ Explanations, visiting and phoning 87 Picture 81 Explanations, appearance and condition 81 Explanations, equipment and care 81 Importance of visiting and phoning 81 > 1500 gm Information packet 100 Picture 93 Explanations, appearance and condition 93 Explanations, visiting and phoning 93 Explanations, equipment and care 93 Importance of visiting 93 No Grant Information packet 100 Explanations, appearance and condition 100 Explanations, visiting and phoning 100 Explanations, equipment and care 91 Picture 91 Explanations, scrubbing and gowning 91 Importance of visiting 91 Grant Information packet 93 Explanations, visiting and phoning 90 Picture 97 Explanations, appearance and condition 87 Explanations, equipment and care 97 Explanations, scrubbing and gowning 83

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-62TABLE 4-10 Objective I Areas Least Highly Rated by Each Subgroup Subgroup Area Percent £ 1500 gm NEO-PIE visits 12 Services in conununity 44 > 1500 gm NEO-PIE visits 1* Services in community 36 Play and stimulation 43 No Grant NEO-PIE visits 9 Services in community 18 Grant NEO-PIE visits 13 Services in community 40

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-63TABLE 4-11 Parent Understanding of the Infant's Condition and Care Objective I Significant Differences Between Mothers Whose Infants Did and Did Not Qualify for the CMS Grant Information Given on the Importance of Visiting the Baby Often* Row Response No (jrant vjITa 1 1 1. X ^ L. Cl J. o Confusing 0 2 2 0« 10% Helpful 5 1 6 45% 5% Very Helpful 5 15 20 45% 79% Other 1 1 2 9% 5% Column Totals 11 19 30 2 X D.F. P. 8.11 3 .044 * All comparisons were made using Chi Square Contingency Tests.

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-64responses were possible: (1) never a problem; (2) sometimes a problem; (3) often a problem; (4) always a problem. The data gathered were analyzed on an item by item basis to determine which areas of coping presented the least problems and which areas presented the greatest problems initially and then over the course of the baby's hospitalization. Table 4-12 presents the areas causing the least problems to the entire sample of mothers at admission and at one month post-discharge. The first two items, being afraid to see the baby and visiting the baby, appear to have consistently not been a problem across time. At admission, the other areas which caused the least problems for the entire sample of mothers were wanting to be alone, being in a bad mood, anger, and the relationship with the baby's father. Other items on the post-test rated as creating the least problem were understanding the baby's problems, eating, confidence in caring for the baby, and being scared to take the baby home . Table 4-13 displays those areas rated as causing the greatest problems at admission and during the infant's hospitalization. Unlike the shifts that took place across time in the areas rated as causing the least problem, very little change took place from admission to discharge in those areas rated as causing the greatest problems. Praying for the baby, money worries, being afraid the baby might die, sadness, and not believing what was happening all

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-65TABLE 4-12 Parent Coping Scale (Part A) Results of Objective IIA for the Entire Sample Areas Causing the Least Problems Mean Pre-test Being afraid to see baby 1*3 Visiting baby ^'^ Wanting to be alone Bad mood • ^ Anger , -^'^ Relationship with baby Post-test Being afraid to see baby 1.2 Visiting baby Understanding baby's problems 1.6 Eating 1.7 Confidence in caring for baby 1.7 Scared to take baby home 1.7

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-66TABLE 4-13 Parent Coping Scale (Part A) Results of Objective IIA for the Entire Sample Areas Causing the Greatest Problems Mean Pre-test Score Praying for baby 3.0 Money worries 2.6 Afraid baby might die 2.6 Thinking and dreaming 2.4 Not believing 2.4 Sadness 2.4 Post-test Praying for baby 3.2 Sadness 2.7 Money worries 2.6 Afraid baby might die 2.5 Not believing 2.4 Depression 2.3

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-67occupied a high priority on the greatest problem list. Thinking and dreaming about the baby at admission was replaced by depression during the course of the baby's stay. Significant differences in ratings between the preevaluation and the post-evaluation were found in three areas of coping (Table 4-14). Sadness increased from a mean score of 2.3 on the pre-evaluation to a mean score of 2.7 on the post-evaluation for the entire sample of mothers. Being in a bad mood also increased over time from a mean score of 1.7 to a mean score of 2.1. Understanding the baby's problems became less of a problem. The mean score on this item decreased from 1.9 to 1.6. One Way Analysis of Variance and T-Tests for Related Samples were used to analyze the data on the "A" part of the Parent Coping Scale. The question about whether the mother had different coping responses, depending on the weight of her infant, was addressed next. Hypothesis VII: There will be no significant changes in coping during the infant's hospitalization between mothers whose infants are in the _< 1500 gram group and mothers whose infants are in the > 1500 gram group. Table 4-15 allows a comparison of preand postevaluation data by weight groups. It shows the areas of

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-68TABLE 4-14 Parent Coping Scale (Part A) Objective IIA Significant Differences Between Pre and Post Evaluations for the Entire Sample Sadness * Pre-test Post-test Mean 2.3 2.7 S.D. .76 .84 D.F. 29 T Value -2.26 Sig. .031 Bad Mood * Pre-test Post-test 1.7 2.1 .74 .93 29 -2.56 .016 Understanding Baby's Problems ' Pre-test Post-test 2.0 1.6 .67 .56 29 3.00 .005 ^All comparisons were made using T-Test for Related Samples,

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-69TABLE 4-15 Parent Coping Scale (Part A) Results of Objective IIA Comparing Mothers with Infants in Each Weight Group Areas Causing the Least Coping Problems Pre Post _< 1500 grams Afraid to see baby (1.3) Anger (1.5) Relationship with baby's father (1.5) Visiting baby (1.5) Afraid to see baby (1.1) Eating (1.5) Sleeping (1.6) Visiting baby (1.6) Understanding baby's problems (1.6) > 1500 grams Wanting to be alone (1.4) Afraid to see baby (1.4) Visiting baby (1.4) Bad mood (1.7) Afraid to see baby (1.3) Visiting baby (1.6) Understanding baby's problems (1.6) Scared to take baby home (1.6) Areas Causing the Greatest Coping Problems _< 1500 grams Praying for baby (3.1) Afraid baby might die (2.8) Thinking and dreaming (2.4) Not believing (2.4) Money worries (2.4) Praying for baby (3.1) Sadness (2.7) Money worries (2.6) > 1500 grams Praying for baby (3.0) Money worries (2.8) Thinking and dreaming (2.4) Depression (2.4) Praying for baby (3.3) Sadness (2.8) Not believing (2.8) Afraid baby might die (2.7)

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-70coping that caused the least and the greatest problems. For both weight groups, on both preand post-evaluation data, two areas stood out as causing the least problems: being afraid to see the baby and visiting the baby. Of the areas causing the greatest coping problems, praying for the baby occupied the highest ranking for both groups on both the preand post-evaluations. Money worries also appears high on the list on the pre-evaluation questionnaire for both weight groups as well as on post-evaluation questionnaire for the lower weight group mothers. Thinking and dreaming about the baby were admission reactions from both weight groups of mothers, and sadness became a problem for both weight groups during the infant's hospital course. How the items on the scale were ranked varied somewhat within the groups and between the groups on the preand post-evaluations. However, no significant differences in mean scores, using One Way Analysis of Variance for each item on the scale, were found on either the preor the post-evaluation between the two weight groups. T-tests for Related Samples were used to see if changes occurred within a particular weight group from the preto the post-evaluation (Table 4-16). For the <. 1500 gram group of mothers, three areas of coping changed significantly. Eating became less of a problem, falling from a mean preevaluation score of 1.9 to a post-evaluation score of 1.5. Understanding the baby's problems also became less of a

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-71TABLE 4-16 Parent Coping Scale (Part A) Objective IIA Significant Differences Within Weight Groups From Pre to Post Evaluation < 1500 grams Eating * Pre Post Bad Mood * Pre Post Mean 1.9 1.5 1.7 2.1 Understanding Baby's Problems * Pre 2.1 Post 1.6 Entire Coping Scale * Pre 43.4 Post 39.3 S.D. .89 .74 .70 .88 ,81 .62 8.0 7.7 D.F. 14 15 15 15 T-Value 2.45 2.74 3.00 Sig. 028 048 ,015 009 Wanting to be Alone * Pre Post 1.4 2.1 > 1500 grams .51 1.29 13 -2.22 .045 *All comparisons were made using T-Test for Related Samples.

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-72problem, declining from 2.1 to 1.6. On the other hand, being in a bad mood became a greater problem for this group during the course of the baby's stay, increasing from a pre-evaluation mean score of 1.7 to a post-evaluation mean of 2.1. Coping problems, overall, decreased significantly in this group. The mean pre-evaluation score on the entire scale was 43.4. It fell to 39.3 on the post-evaluation. Only one area of coping changed from the preto the post-evaluation in the > 1500 gram group of mothers. Wanting to be alone became more of a problem as time passed. Initially, the mean score on this item was 1.4. It increased to 2.1 on the post-evaluation. Hypothesis VIII: There will be no significant changes in coping during the infant's hospitalization between mothers whose infants are in the No Grant group and mothers whose infants are in the Grant group. Table 4-17 lists the areas judged to cause the least problems on the preand post-evaluation for the No Grant and Grant groups. Table 4-17 also lists those areas judged to be most problematic. As before, being afraid to see the baby was not a problem for either group at admission or during the course of the baby's stay. On the preevaluation, wanting to be alone was not a problem for either

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TABLE 4-17 Parent Coping Scale (Part A) Results of Objective IIA Comparing Mothers with Infants in the No Grant and Grant Groups Areas Causing the Least Cop ing Problems Pre Post Relationship with baby's father (1.2) Afraid to see baby (1.3) Wanting to be alone (1.4) Relationship with baby's father (1.3) Afraid to see baby (1.3) Visiting baby (1.3) Understanding baby's problems (1.3) Grant Visiting baby (1.3) Afraid to see baby (1.2) Afraid to see baby (1.4) Confidence in caring for Anger (1.7) baby (1.6) Wanting to be alone (1.7) Scared to take baby home (1.6) Areas Causing Greatest Coping Problems No Grant Praying for baby (3.0) Afraid baby might die (2.8) Not believing (2.7) Praying for baby (3.0) Sadness (2.6) Not believing (2.4) Grant Praying for baby (3.0) Money worries (2.9) Thinking and dreaming (2.4) Afraid baby might die (2.4) Praying for baby (3.3) Money worries (2.9) Sadness (2.8) Afraid baby might die (2.7)

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-74group. The No Grant group found that, over the course of the baby's stay, their relationship with the baby's father caused the least problem. In the greatest problem category, praying for the baby had the highest mean item score on both the preand postevaluation for both the No Grant and Grant groups. The pre-evaluation showed high mean scores for being afraid the baby might die for both groups of mothers, but it remained a problem for the Grant group only. The post-evaluation indicated that sadness, while not initially a great problem for either group, became one for both groups during the course of the baby's hospitalization. The area that remained a large problem from the preto the post-evaluation for the No Grant group was not believing what was happening (shock). In addition to being afraid the baby might die, money worries remained a high ranking coping problem for the Grant group across time. Using One Way Analysis of Variance, significant differences between the No Grant and Grant group were found in two areas on the pre-evaluation and in one area on the post-evaluation (Table 4-18). On the pre-evaluation, the No Grant group had less problems in their relationship to the baby's father than did the Grant group (mean scores of 1.2 to 1.9). They also had less worries about money (mean scores of 2.1 to 2.9). The post-evaluation indicated that

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-75TABLE 4-18 Parent Coping Scale (Part A) Objective IIA Significant Differences Between No Grant and Grant Groups Money Worries ' No Grant Grant Relationship with Baby's Father * No Grant Grant Relationship with Baby's Father * No Grant Grant Mean 2.1 ^.9 1.2 1.9 1.3 2.1 Pre-Evaluation S.D. D.F. .94 .91 1.28 .40 1.28 1.2 Post-Evaluation .65 1.2 1.28 F. 6.00 4.3 4.67 Sig. ,021 ,047 039 *All comparisons were made using One Way Analysis of Variance.

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-76the No Grant group still had significantly less of a problem in their relationship to the baby's father than did the grant group (1.3 to 2.1). One Way Analysis of Variance was also used to make the post-evaluation between group comparisons. Significant differences within groups from the preto the post-evaluation were found using T-tests for Related Samples (Table 4-19). In the No Grant group, the mothers' worry that the baby might die diminished from a mean score of 2.8 on the pre-evaluation to 2.2 on the post-evaluation. Two areas became more of a problem across time for the Grant group and one area became less of a problem. Being in a bad mood and visiting the baby had mean score increases from 1.8 to 2.3 and 1.4 to 1.8, respectively. Being afraid to see the baby became less of a problem with the mean score decreasing from 1.4 to 1.2. Objective II Parent Coping Scale (Part B) Helpfulness of the Staff with Coping The post-evaluation form of the Parent Coping Scale contained a "B" part which asked the mother to rate how helpful she perceived the NICU staff to be with areas of coping that presented problems. When the responses to Part "B" were reviewed, it was found that the mothers not only rated the staff on their helpfulness but reported areas of coping that did not present a problem and areas where they did not tell the staff they had a problem.

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-77TABLE 4-19 Parent Coping Scale (Part A) Objective IIA Significant Differences Within the No Grant and Grant Groups From Pre to Post Evaluation No Grant Thinking Baby Might Di"e^ Pre Post Mean 2.8 2.2 S.D. .60 .98 D.F, 10 T-Value 2.61 Sig, ,026 Grant Bad Mood * Pre 1.8 .79 Post 2.3 .87 Afraid to See Baby * Pre 1.4 .51 Post 1.2 .42 Visitin g Ba by * Pre 1.4 .70 Post 1.8 1.04 18 18 18 -2.45 2.19 -3.06 ,025 ,042 ,007 *A11 comparisons were made using T-Test for Related Samples.

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-78Table A-5 displays the results of the data analysis on Part "B" of the Parent Coping Scale Helpfulness of the Staff with Coping. Data are presented for the entire sample, as well as for each of the subgroups, weight and grant. The table shows for each item on the scale what percentage of the group in question responded in the following ways: (a) not a problem needing help; (b) didn't tell the staff the area was a problem; (c) found the staff to be very helpful or helpful. The entire sample mean score for each item is also shown. Descriptive statistics and Chi Square Contingency Tests were used to generate the table and to compare groups. Very helpful (items rated 1) and helpful (items rated 2) responses were combined for each area. The percentage of each group giving the NICU staff a rating of one or two is then reported. Other possible ratings were not helpful (3) and made the problem worse (4). The information thus generated made it easier to rank satisfactions with NICU services within groups and to compare the relative effectiveness of each service between groups. Some mothers did not have a particular reaction or, if they did, felt they could handle the situation by themselves. Table 4-20 displays those areas for the entire sample of mothers. A large percentage of mothers in the sample either did not find the following to be a problem or did not want help with the problem: Being afraid to see the

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-79TABLE 4-20 Parent Coping Scale (Part B) Helpfulness of Staff With Coping Results of Objective IIB for the Entire Sample Areas Rated as Not a Coping Problem Needing Help Percent of Total Afraid to see baby "^^ Visiting baby Relationship with baby's father 55 Eating ^' Thinking and dreaming 3° 37 Anger Areas Where Staff Was Not Told This Was a Problem Praying for baby ^1 Bad mood 1^ Sleeping Areas Where Staff Was Most Highly Rated * Mean Score Help with crying 1-0 Help with money worries 1«3 Help with visiting baby 1*3 Help with understanding baby's problems 1.3 Help with being scared to take baby home 1.3 Help with sadness 1'4 Areas Where Staff Was Less Highly Rated * Help with eating 2.3 Help with bad mood 2.0 Help with praying for baby 2.0 Help with sleeping 1.9 Help with anger 1.9 Help with wanting to be alone 1.9 * Response choices range from 1 {very helpful) to 4 (made problem worse). There was also another category which was broken down into 0 (was not a coping problem needing help) and 5 (the staff was not told it was a problem).

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-80baby (79%); visiting the baby (59%); the relationship with the baby's father (55%); eating (47%); thinking and dreaming (38%); anger (37%). Many of the above-named areas mirror the areas said to cause the least coping problems for the sample as a whole on the "A" part preand/or postevaluations. Table 4-20 also indicates the areas where a mother had a problem but did not tell the staff. Areas displaying the highest percentages for the entire sample include praying for the baby (41%); being in a bad mood (17%); and sleeping (14%). Praying for the baby presented the largest coping problem on both the preand post-evaluations of Part "A". The average mother in the sample often found herself praying for the baby, but kept it to herself. The areas where the NICU staff were rated roost helpful and least helpful by the entire sample are presented on Table 4-20. The most helpful areas include help when crying was a problem (1.0); help with money worries (1.3); help with visiting the baby (1.3); help with understanding the baby's problems (1.3); help with being scared to take the baby home (1.3); and help with sadness (1.4). The staff was least helpful with eating (2.3); being in a bad mood (2.0); praying for baby (2.0); sleeping (1.9); anger (1.9); and wanting to be alone (1.9). Hypothesis IX: There will be no significant difference between

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-81mothers of infants weighing _< 1500 grams and mothers of infants weighing > 1500 grams in the mothers' perception of helpfulness of the staff with coping. Hypothesis X: There will be no significant difference between Grant and No Grant mothers in mothers' perception of helpfulness of the staff. Table 4-21 shows those areas not perceived as a coping problem, broken down by subgroup. Table 4-21 also looks at the areas where the mothers did not tell the NICU staff they had a problem. The percentages displayed on this table are of the particular subgroup under each heading. In other words, on Table 4-21, 87% of the <. 1500 gram mothers found being afraid to see the baby was not a problem needing help. The rankings for the four subgroups are quite similar. Being afraid to see the baby, visting the baby and the relationship with the baby's father were all considered problems not needing help. Praying for the baby ranked as the greatest problem area all four subgroups kept to themselves. The > 1500 gram mothers and the Grant mothers had more areas they kept to themselves than did the £ 1500 gram mothers and the No Grant mothers.

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-82TABLE 4-21 Parent Coping Scale (Part B) Helpfulness of Staff with Coping Results of Objective IIB for Each Subgroup Areas Rated as Not a Coping Problem Needing H elp < 1500 grams Percent Afraid to see baby 87 Eating 56 Visiting baby 56 Thinking and dreaming 44 Relationship with baby's father 44 Understanding baby's problems 40 > 1500 grams Relationship with baby's father 69 Afraid to see baby 69 Visiting baby 61 Wanting to be alone 46 No Grant Relationship with baby's father 90 Afraid to see baby 80 Visiting baby 70 Understanding baby's problems 54 Grant Afraid to see baby 79 Visiting baby 53 Eating 47 Relationship with baby's father 42

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-83Table 4-21 — continued Did Not Tell Staff Area Presented a Problem < 1500 grams Percent Praying for baby 25 Thinking and dreaming 12 > 1500 grams Praying for baby €1 Bad mood 31 Sleeping 23 Crying 21 No Grant Praying for baby 54 Wanting to be alone ^8 Grant Praying for baby 33 Bad mood 22 Sleeping 17 Visiting baby 16 Crying 16

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-84Table 4-22 displays those areas where the staff was found to be most highly rated and less highly rated, broken down by subgroup. Very little variation in rankings was found between the < 1500 gram mothers and the > 1500 gram mothers. The same can be said when the Grant and No Grant mothers were compared. Chi Square Contingency Tests were used to ascertain if significant differences in response patterns occurred between subgroups. No significant differences were found between the £ 1500 gram and > 1500 gram groups of mothers on how helpful they found the staff to be. However, significant differences were found between the No Grant and Grant mothers in two areas (Table 4-23). Only 27% of the No Grant group found the NICU staff to be very helpful or helpful when they were afraid the baby might die, whereas almost 74% of the Grant group found the NICU staff helpful or very helpful with the same problem. When they wanted to be alone, 50% of the Grant group found the staff to be very helpful or helpful, and only 27% of the No Grant group felt the same way. Thirty-six percent of the No Grant group indicated that the staff were either not helpful or made the problem worse when they wanted to be alone, whereas no one in the Grant group felt this way. Objective III Neonatal Perception Inventory (NPI) The Neonatal Perception Inventory (NPI) was administered to the mother at admission and at one-month

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-85TABLE 4-22 Parent Coping Scale (Part B) Helpfulness of Staff with Coping Results of Objective IIB by Subgroup Areas Where Staff Was Most Highly Rated Percent Found Very Helpful < 1500 or Helpful Sadness 100 Depression 75 Not believing 75 Caused baby's problems 69 Crying 69 > 1500 Sadness 93 Not believing 71 Depression 64 Understanding baby's problems . 64 No Grant Sadness 91 Not believing 73 Depression 64 Caused baby's problems '60 Scared to take baby home 60 Grant Sadness 100 Money worries 78 Understanding baby's problems 78 Depression 74 Not believing 74 Afraid baby might die 74

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-86Table 4-22 — continued Areas Where Staff Was Le ss Highly Rated Percent Found Very Helpful < 1500 or Helpful Afraid to see baby ^ Eating . Visiting baby > 1500 Relationship with baby's father 15 Visiting baby ^3 Praying for baby No Grant Q Eating ^ Bad mood . _ Relationship with baby's father Afraid to see baby Grant 10 10 Afraid to see baby 21 Visting baby 32 Relationship with baby's father 37 Eating 37

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-87TABLE 4-23 Parent Coping Scale (Part B) Helpfulness of Staff with Coping Objective IIB Significant Differences Between No Grant and Grant Groups Help With Being Afraid Baby Might Die* Row No Grant Grant Totals Not a Coping Problem 3 27% 4 21% 7 Very Helpful 1 9% 12 63% 13 Somewhat helpful 2 18% 2 10% 4 Not Helpful 2 18% 0 0% 2 Made Worse 1 9% 0 0% 1 Didn't Tell Staff 0 0% 1 5% 1 Other 2 18.2% 0 0% 2 Column Totals 11 19 30 2 X D.F. P. 14.3 6 .026

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-88Table 4-23 — continued Help Wi t h Wanting to be Alone * Row Response No Grant Grant Totals Not a Coping Problem 4 36% b 33% 1 u Very Helpful 3 27% A 4 22% Somewhat helpful 0 0% 5 28% 5 Not Helpful 2 18% 0 0% 2 Made Worse 2 18% 0 0% 2 Didn't Tell Staff 0 0% 3 17% 3 Column Totals 11 18 29 X 11.52 D.F, 5 P. .042 Comparisons were made using Chi Square Contingency Tests,

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-89post-discharge in an attempt to document any changes which occurred, as a result of intervention, in the mother's perceptions of her infant. On both the preand post-evaluation forms, the mother is asked to compare her baby with an average baby. A mother who showed adequate attachment behavior would rate her infant at least as good as or better than the average infant. The post-evaluation form of the NPI also contained a Degree of Bother Inventory which had the mother rank how bothersome she felt her infant was in five separate areas. Mothers who express a high degree of frustration with their infants are at risk for attachment failure. Hypothesis XI: On the preevaluation, the difference scores on the NPI for mothers of infants weighing £ 1500 grams will not be significantly different from those of mothers of infants weighing > 1500 grams. Hypothesis XII: On the preevaluation, the difference scores on the NPI for Grant mothers will not be significantly different from those of the No Grant mothers. Hypothesis XIII: On the postevaluation, the difference scores on

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-90the NPI for mothers of infants who weigh £ 1500 grains will not be significantly different from those of mothers of infants who weigh > 1500 grams. Hypothesis XIV: On the postevaluation, the difference scores on the NPI for Grant mothers will not be significantly different from those of the No Grant mothers. One Way Analysis of Variance was used to test Hypotheses XI, XII, XIII, and XIV. All four hypotheses were accepted as no significant differences were found between groups on either the preor post-evaluations. Mean and difference scores are shown on Table 4-24. Hypothesis XV: There will be no significant change in difference scores on the NPI from the preto the post-evaluation for mothers of infants weighing £ 1500 grams or mothers of infants weighing > 1500 ,. grams. Hypothesis XVI: There will be no significant changes in difference scores on the NPI from the preto

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-91TABLE 4-24 Neonatal Perception Inventory Results of Objective III for the Entire Sample Pre-Evaluation Mean Scores < 1500 > 1500 N.G. G. Average baby 15.64 16.33 14.85 15.09 16.00 Your baby 15.79 16.37 15.08 15.90 15.74 Post-Evaluation Mean Scores Average baby 14.87 14.94 14.78 16.09 14.16 Your baby 14.48 14.50 14.46 15.45 13.89 Degree of 6.93 bother (Post evaluation only ) 7.68 6.07 7.27 6.74 post-evaluation for Grant or No Grant mothers. Hypotheses XV and XVI were tested using T-tests for Related Samples. Both were accepted because the difference scores did not change significantly from the pre-evaluation to the postfor any of the subgroups. Hypothesis XVII: There will be no significant difference in how bothersome the infant is perceived to be at one month post-discharge

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-92between mothers of infants weighing < 1500 grams and mothers of infants weighing > 1500 grams. Hypothesis XVIII: There will be no significant difference in how bothersome the infant is perceived to be at one month post-discharge between mothers in the Grant and mothers in the No Grant groups. Table 4-24 contains the results frcwti the Degree of Bother Inventory. Using One Way Analysis of Variance, Hypotheses XVII and XVIII were accepted. There were no significant differences between any of the groups. Objective IV Parent Understanding of the Infant's Behavior and Needs This instrument is a true/false test designed to determine if changes in a mother's awareness of her infant's behavior and needs took place as a result of the interventions provided by the staff during the infant's hospitalization. The same instrument was used for both the preand post-evaluations. Kuder-Richardson Formula 20 was used to determine the reliability of this instrument. The pre-test reliability was 0.42 and the post-test reliability 0.59. These reliability coefficients can be considered acceptable for a research instrument being used for group comparisons (Thorndike & Hagen, 1977, pp. 92-94).

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-93Hypothesis XIX: There will be no significant differences in the number correct on the pre-evaluat ion test of a mother's understanding of her infant's behavior and needs between mothers of infants weighing < 1500 grams and mothers of infants weighing > 1500 grams. Hypothesis XX: There will be no significant differences in the number correct on the pre-evaluation test of a mother's understanding of her infant's behavior and needs between mothers in the Grant and No Grant groups. Hypothesis XXI: There will be no significant differences in the number correct on the postevaluation test of a mother's understanding of her infant's behavior and needs between mothers of infants weighing _< 1500 grams and mothers of infants weighing > 1500 grams. Hypothesis XXII: There will be no significant differences in the

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-9Anumber correct on the postevaluation test of a mother's understanding of her infant's behavior and needs between mothers in the Grant and No Grant groups. Eighteen correct responses were possible on this test. Table 4-25 reflects the average number correct on both the preand post-tests for the entire sample and each of the groups, weight and grant. Hypotheses XIX, XX, XXI, and XXII were tested using One Way Analysis of Variance and each was accepted. No significant differences were found between groups on either the pre-test or the post-test. The results from the preand post-tests were then analyzed using T-tests for Related Samples to see if there were significant changes in the entire sample or within each of the groups from the preto post-test. As Table 4-26 indicates, the average number correct for the entire sample of mothers increased significantly from 13.88 on the pretest to 14.63 on the post-test, a mean increase of 0.75 points . Hypothesis XXIII: There will be no significant changes from the pre-test to the post-test in the number correct on the test of a mother's understanding of her infant's behavior and needs between

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-95TABLE 4-25 Parent Understanding of Infant Behavior and Needs Results of Objective IV for the Entire Sample Total Number Correct/Eighteen Possible Correct Responses < 1500 > 1500 N.G. G. Pre-e valuation* 13. 83 13.37 14.35 14.64 13.37 Post-evaluation** 14. 63 14.44 14.86 14.82 14.53 * Test Reliability using Coefficient Alpha .42 ** Test Reliability using Coefficient Alpha = .59 mothers of infants weighing £ 1500 grams and mothers of infants weighing > 1500 grams. Hypothesis XXIV: There will be no . significant changes from the pretest to the post-test in the number correct on the test of a mother's understanding of her infant's behavior and needs between Grant and No Grant mothers. There were no significant changes from the preto the post-test within the _< 1500 grams, > 1500 grams, or No Grant groups. However, as Table 4-26 shows, the Grant group had an average of 1.16 more items correct on the post-test than on the pre-test. This increase was significant.

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-96TABLE 4-26 Parent Understanding of Infant Behavior and Needs Objective IV Significant Differences Between Pre and Post Test Entire Sample * T Mean S.D. D.F. Value Sign, Pre-test 13.88 .2.33 29 -2.37 .024 Post-test 14.63 2.27 Within Groups* Grant Pre-test 13.37 2.31 18 -2.63 .017 Post-test 14.53 2.14 Comparisons were made using T-Test for Related Samples.

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CHAPTER V DISCUSSION The major purpose of this study was to evaluate the components of a system of instruction and support developed for mothers of infants admitted to Orlando Regional Medical Center's Neonatal Intensive Care Unit. The minor purpose of this study was to determine if the intervention effects of each component were different for different types of mothers. Compared were data from mothers of infants weighing < 1500 grams and mothers of infants weighing > 1500 grams. Also compared were data from mothers whose infants qualified for a grant paying the infants' hospital bills and mothers whose infants did not. Background Data The sample of thirty mothers used for this study should have adequately represented the population of mothers whose infants were admitted to Orlando Regional Medical Center's Neonatal Intensive Care Unit. Between September 18, 1982, and March 2, 1983, there were 195 admissions to the NICU. Every mother whose infant met the study criteria and who -97-

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-98could be contacted within 24 hours after the baby's admission was asked to participate in the study. One hundred fifteen infants met the study criteria. Of these, 21 infants expired within the first twenty-four hours of life. There were ninety-four potential candidates for the study during this period. Seventy mothers initially agreed to volunteer. During the course of the study, six infants expired and thirty mothers failed to complete the post-evaluation. Four infants were still in the hospital when the study period ended. The only sample biases that may be present are those inherent when volunteers are used and when the sample size is small. It should be possible to draw worthwhile conclusions from this study about the effects of the intervention model. The analysis of the background variables of the two weight groups of infants revealed that they were essentially alike. The only difference between the mothers in the two groups was that the mothers of the larger infants called to check on their babies about twice as often as the mothers of the lower weight infants. It was difficult to assess exactly why this difference occurred. Since the mothers of the lower weight infants did manage at least one call per day, this difference did not seem to be due to lack of interest. This conclusion appears to be substantiated by the fact that there were no significant differences between

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-99the groups in visits to the baby (see Table 4-5). Other factors, such as lack of access to a phone or not understanding how to use the WATTS line, may account for this difference in calling patterns. A smaller, more premature infant is admitted to a neonatal unit for different reasons than a larger infant. In general, the smaller infants have problems stemming from immature organ systems that cannot quite handle life outside of the womb. The larger infant is often admitted for problems related to lack of oxygen at birth. In comparing the two weight groups of infants, significant differences were found in background variables related to size. That was to be expected. With the exceptions of those variables, the two groups were quite similar. When the thirty mothers were subdivided into Grant and No Grant categories, significant differences were found in maternal age and level of education with the Grant mothers being younger and less educated. These findings are substantiated by other studies correlating high risk birth to low income and adolescent pregnancy (Osofsky & Kendell, 1973). On all other background variables for both mother and infant, there were no significant differences. In summary, the entire sample of thirty mothers appears to adequately reflect the type of mothers regularly encountered in the NICU. When the thirty mothers were divided

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-100'( according to the weight of their infants, differences were found in the number of calls each mother made to the unit and in the infant's APGAR scores, how asphyxiated he was, his gestational age, birth weight, and whether meconium was found at birth. When the thirty mothers were redivided into Grant and No Grant categories, differences were found in mother's age and level of education. The infants appeared similar. Objective I Parent Understanding of the Infant's Condition and Care Overall, the thirty mothers appeared very satisfied with the staff's efforts toward helping them understand their infants' problems and how these problems were being handled. The item scores for the entire sample ranged frcan a low of 2.9 (helpful) to a high of 3.7 (very helpful), on a four point scale. These scores were derived only from those responses where the mothers indicated they received the service. The staff was most helpful with the services rendered at the time of the infant's admission. Over the course of the infant's hospitalization, the helpfulness of the staff seemed to diminish. During the time the infant was a patient in the NICU, the mother should have become familiar with services available for herself and her baby. As the baby progressed, her focus should have been directed toward

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-101appropriate parenting skills to include caretaking and developmental play. The mothers polled indicated they were least satisfied with the information provided about services both in the community and in the hospital. A large number of mothers did not receive this type of information at all. Other areas not available to a large percentage of the mothers were instruction on infant stimulation and discharge teaching and materials. Eighty-six percent of the mothers stated that they did not receive NEO-PIE visits. This was because very few of the babies in the study qualified for these services. It can be reasoned that staff services diminished over the course of the baby's hospitalization because: 1) The greatest crisis for most mothers appears to be at the time of the infant's admission. The NICU was and continues to be overcrowded causing staff shortages. Only a limited amount of time can be offered to the mother and this is given at the time of the mother's greatest need. 2) When the staff is overworked, they must attend to the most pressing

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-102needs of the child and these are always his medical needs. Little time is left to attend to his developmental needs or to teaching his mother. 3) Infants were and continue to be discharged in haste in order to make room for new sick babies. This results in less than adequate discharge procedures. Satisfactions with the services provided were no different for mothers of infants weighing < 1500 grams than for mothers of infants weighing > 1500 grams. The same can be said for the comparisons made between Grant and No Grant mothers. A significant difference did appear between the Grant and No Grant mothers regarding how satisfied they were with the information given on the importance of visiting the baby often. However, inspection of this Chi Square Contingency table reveals that at least 80% of both groups found the staff to be very helpful or helpful and it was the difference in distribution of responses between the very helpful and helpful cells that caused there to be a significant difference (see Table 4-13). Objective II Parent Coping Scale (Part A and Part B) The reason for choosing the Parent Coping Scale as part of this evaluation was to assess changes in a mother's

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-103reactions to the birth of her high risk infant and to see how helpful the staff was perceived to be in helping her handle these reactions. Areas that were a problem, initially, for the entire sample continued to be so during the course of the baby's hospitalization — with one exception. The most persistent reactions included praying for the baby, worrying about money, being afraid the baby might die, sadness and not believing what was happening. The exception was that the need to think and dream about the baby was replaced later on by depression. The two areas that the entire sample found to cause the least problem initially remained so. Very few mothers were afraid to see the baby or had difficulty visiting the baby. Most of the mothers felt very attached to their infants. There were two areas which increased significantly as problems for the entire sample, sadness and being in a bad mood. One area, understanding the baby's problems, decreased significantly. Sadness was not only a persistent problem for everyone, but became more of a problem over time. Being in a bad mood increased as a problem for the entire sample, but this increase came about because the sixteen mothers in the Grant group had this become more of a problem during the baby's stay. Being in a bad mood did not give the No Grant mothers great difficulty. Understanding the baby's problems became significantly less of a

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-104problem from admission to discharge. It was not one of the areas causing the least problems at admission, but became one by discharge. It is interesting, at this point, to look at the "B" Part of the Parent Coping Scale — Helpfulness of the Staff with Coping . How helpful was the staff in those areas presenting the greatest problems to the entire group of mothers? Two areas where the staff help was most highly rated were with money worries, most probably because the CMS Grant was available, and with sadness. As helpful as the staff was, sadness still increased significantly and money continued to be a problem. The staff was also highly rated for the way they helped the mother understand the baby's problems. This area decreased significantly as a problem from admission to discharge, and it appeared as an area causing the least problems on the post-evaluation. It does appear that a good job was done in this area. One area of those causing least problems, visiting the baby, found the mothers divided regarding the helpfulness of the staff. A large portion of the mothers said this was not an area needing help. However, those mothers who needed this help found the staff to be very supportive. In most cases, the mothers were able to find a way to visit the baby by themselves. For those mothers who had difficulty, either

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-105a ride with another family was arranged or money was provided by the hospital for transportation. There was no significant change from the pre-evaluation to the post on the item being scared to take the baby home. Yet, this was one of the areas where the mothers found the staff to be most helpful and the item found its way to the least coping problem list on the Part "A" post-evaluation. Even though there was no change in this item, the mothers felt staff support reduced their anxiety. The area in which the staff was rated as being the most helpful, crying, was a moderate problem which did not seem to change in magnitude from admission to discharge. Staff intervention may have prevented the problem from becoming any worse. When looking at the helpfulness of the staff, it stands out that the staff either was not told about or was ineffective in dealing with the area rated as being the greatest problem to the mothers, praying for the baby. Nearly half the mothers said they did not share this problem and those that did rated the staff as not helpful. Religion is a very personal matter to most people and not easily shared. It appears that a way to resolve this dilemma would be to make the hospital's pastoral counseling services better known to the mother. It could be concluded that had we done a better job in making hospital services known (Objective I), the mothers may have felt more understood.

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-106As much as the staff was able to help the mothers understand the baby's problems, they were not perceived as helpful in reducing the mothers' tremendous fear that the baby might die. This persisted as a problem during the course of the baby's hospital stay. The same can be said for not being able to believe what was happening. It appears the staff needs to explore these two problems more thoroughly. It is important to remember that most of the mothers have the inner resources to deal with many of their problems. Thinking and dreaming about the baby was rated as a large problem, initially, but the mothers also reported that they felt it was not a problem needing outside help. This area was not rated as one of the biggest problems on the post-evaluation. Depression, which was not one of the areas presenting the most difficulty on the pre-evaluation made this list on the post-evaluation. The staff was rated as very helpful or helpful by almost all of the mothers in the sample. It appears the staff paid attention to the problem, but the problem increased non-the-less . When comparisons were made between the subgroups on the Part "A" pre-evaluation and then again on the post-evaluation, few differences were found between the two weight or the No Grant and Grant groups. No significant differences

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-107were found on either the preor post-evaluations between the < or > 1500 gram groups of mothers. On the pre-evaluation, significant differences were found between the Grant and No Grant groups in two areas. The Grant group had more of a problem with the baby's father than did the No Grant group. The Grant group also had more worries about money. On the post-evaluation, there was no significant difference between these two groups on how much of a problem they found money to be. However, there was still a significant difference between the two subgroups in how much of a problem each group had with their relationship to the baby's father. On the "B" part of the Coping Scale, the Grant group placed staff help with money worries on the most helpful list. The No Grant group did not. This, in part, could account for why there was not a significant difference between these two groups on the post-evaluation. The Grant group got the help they needed. The staff was not very effective in helping either group deal with their relationship with the baby's father. The staff was rated as least helpful by both groups in this area. The Grant group, in this case, did not get the help they needed and the difference between the groups continued. A significant difference on the "B" Part of the Coping Scale was found between the No Grant and the Grant groups in how helpful each found the staff to be with wanting to be

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-108alone. More of the Grant mothers found the staff to be very helpful or helpful (50%) than the No Grant mothers (27%). More No Grant mothers found the staff to either not be helpful or to make the problem worse (36% vs. 0%). On the "A" Part, there was no significant difference between these groups on this item for either the preor post-evaluation. There were also no within group changes from the preto the post-evaluation for either the Grant or the No Grant group. However, for both groups, this was ranked as a "least problem" on the pre-evaluation and was not a "least problem" on the post-evaluation. The difference between these two groups in their perception of the helpfulness of the staff may be related to the differences in the groups themselves. The Grant mothers may have needed the support system provided by the staff when they thought they wanted to be alone . while the No Grant mothers, having their own resources, really preferred to be left alone. Within the groups, there were significant changes in coping from the preto the post-evaluation. Eating and understanding the baby's problems became less of a problem over time for the _< 1500 gram group of mothers (Table 4-17). Yet, a large percentage of these mothers (56% for eating and 40% for understanding the baby's problems) stated on the "B" Part that these were problems not needing staff help (Table 4-21). This group improved in these areas

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-109without feeling the need for outside help. Within this group, however, being in a bad mood became more of a problem (Table 4-19). The staff was perceived as being very helpful or helpful by 44% of these mothers (Table A-5). This reaction, like sadness and depression, must be part of a process that mothers must go through and the best the staff can hope to do is help to minimize this reaction. Overall, coping problems for the < 1500 gram group of mothers decreased significantly indicating that these mothers were able to effectively call upon their own inner resources as well as external resources to reduce their stress. The > 1500 gram group of mothers found that wanting to be left alone became more of a problem as time passed. In spite of the significant increase in this area from the preevaluation to the post-evaluation, many of these mothers (46%) stated it was not a problem needing staff help (Table 4-21) and 15% didn't tell the staff it was a problem (Table A-5). This was the only area of change within this subgroup. Worry that the baby might die diminished significantly from the preto the post-evaluation within the No Grant group but not within the Grant group. Chi Square Contingency Tests on the "B" Part of the Coping Scale (Table 4-23) showed that there were significant differences between the No Grant and Grant groups in how helpful each found the

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-nostaff to be with coping in this area. The Grant group actually found the staff to be more helpful, yet it was the No Grant group who had the change. A reasonable explanation for this may be that the No Grant group is older and more educated than the Grant group and may feel they can handle more of their problems on their own. They may seek less staff support. Fearing the baby might die could have become significantly less of a problem for them because 1) they were better able to appraise the infant's chances for survival and 2) for them, the crisis was over by the time they filled out the post-evaluation questionnaire. The Grant group had significant within group changes in three areas. Two areas became more of a problem and one area became less of a problem. Being in a bad mood became more of a problem, but 45% of these mothers did not see this as an area needing staff help and 9% did not share this problem with the staff. Of those mothers who shared the problem, only 9% felt they derived any benefit from the staff. It appears that many Grant mothers did not find this an appropriate problem to share with the staff and those who did did not get adequate support. Visiting the baby also increased as a problem and was one of the areas where the staff was rated as least helpful by the Grant group of mothers. Only 32% rated the staff as very helpful or helpful. This was because 53% of the Grant mothers did not feel this was a problem needing help and 16%

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-Illdid not tell the staff it was a problem. Those Grant mothers who shared the problem with the staff got the help they needed. It appears that the staff needs to pay more attention to discussing the problems of visiting with this particular group. The Grant group found that being afraid to see the baby became less of a problem over time. This problem diminished, seemingly, with little staff help. Seventy-nine percent of this group did not feel this was a problem needing help and only 21% found the staff to be very helpful or helpful. The staff was rated as least helpful to this group in this area. It makes sense that it would become easier to see the baby as the baby improved and the mother got used to the NICU environment, even without specific staff support. Finally, it is interesting to note that the mothers with the larger babies and the mothers in the Grant group seemed to keep more of their thoughts to themselves (Table 4-21). Each of these subgroups had many problem areas they did not share with the staff. Objective III Neonatal Perception Inventory (NPI) At first glance, it might be concluded that the interventions provided by the staff did not result in any changes in the mothers' perceptions of their infants. In actuality, the entire sample rated their babies to be as

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-112good as the average baby on the pre-evaluation and this rating held up for the post-evaluation. It appears that the staff may have been instrumental in helping the mother keep her high opinion, in spite of the trauma the infant had suffered. No significant differences occurred between any of the groups or within the groups. The entire sample of mothers rated their infants as being very little bother at one month post discharge. The ratings of each of the four subgroups were approximately the same. No differences were found between any of the subgroups in how bothersome they found the babies to be. Overall, it appears that the mothers had a positive attitude about their infants at birth which was sustained at one month post discharge. The mothers also seemed to be enjoying their babies at one month post discharge — a time which could be difficult for a new mother. Staff support seems to have been instrumental in helping the mothers to continue to have positive feelings about their infants, even after both mother and infant experienced such a difficult beginning . Objective IV Parent Understanding of the Infant's Behavior and Needs Analysis of this true/false exam found a significant increase of eight-tenths of a point from the preto the post-evaluation for the entire sample of mothers. A significant increase took place in the mother's awareness of

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-113her infant's behavior and needs, presumably as a result of staff intervention. The Grant group was the only subgroup to have a significant increase from the preto the post-evaluation. It is within this subgroup that the staff seems to have made its impact. This makes sense since this group included mothers with the lowest age and educational level of any of the subgroups. As the pre-evaluation score reflects, these mothers had the lowest knowledge base and should have been the group to most benefit from staff instruction. Had the staff been better at offering instruction on how to play with and stimulate an infant, the increase in the mothers' knowledge may have been greater for all the groups. Caution must be taken in accepting the results of this part of the evaluation. The reliability of this instrument is low at .42 for the pre-evaluation and .59 for the postevaluation. These reliability coefficients are acceptable for a research instrument, but it does place the results from the instrument in some doubt. Further, since it was the least educated group that had the greatest increase in knowledge, it may be that the increase in score was due to regression toward the mean rather than any change in knowledge. While a gain of one point on an 18 point test is statistically significant, the practical significance is not quite clear.

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-114Table A-6 in the Appendix shows an item-by-item analysis of each question. It shows how many of the 30 sample mothers answered each question correctly on the preand post-tests. If less than 75% (22.5) of the mothers passed an item on the post-test, the item was evaluated. In doing this analysis, two facts became clear. First, two of the questions were ambiguous and need to be rewritten. Both questions centered on how protected an infant needs to be. Second, three aspects of infant behavior and needs were not well taught by the staff. These areas include infant states of consciousness, visual abilities, and apnea (forgetting to breathe, a condition fairly common among premature infants). Conclusions and Implications The results of this study have led to the following conclusions: 1. The entire sample of 30 mothers adequately represented the population of mothers whose infants are admitted to Orlando Regional Medical Center's Neonatal Intensive Care Unit. 2. The £ 1500 gram group of mothers and the > 1500 gram group of mothers were essentially alike with the following exceptions: a) the number of calls the mothers made to the unit per week; b) the differences found between the infants due to weight factors only.

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-1153. The Grant and No Grant groups of mothers differed with respect to age and level of education. All other background variables appeared similar. 4. Overall, the mothers appeared very satisfied with services the staff provided to help them understand their infants' condition and care. 5. In helping the mothers understand their infants' condition and care, the staff was more helpful at admission than at discharge. Discharge services need to be improved. 6. In helping the mothers understand their infants' condition and care, more information needs to be provided regarding services in the hospital and the community and on how to play with and stimulate the baby. 7. There were no differences between the < 1500 gram group and the > 1500 gram group of mothers or between the No Grant and Grant group of mothers in how satisfied they were with the services provided to help them understand their infants' condition and care. 8. Following the birth of their high risk infant, the entire sample of mothers persistently had the following coping problems during their infants' hospitalization: a) praying for the baby; b) worrying about money; c) being afraid the baby might die; d) sadness; e) not believing what was happening.

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-1169. Following the birth of their high risk infant, the entire sample of mothers had little difficulty with being afraid to see their baby or with visiting their baby. 10. Following the birth of their high risk infant, sadness increased as a problem for the entire sample of mothers during the course of their infants' hospitalization. 11. Following the birth of their high risk infant, being in a bad mood increased as a problem for the entire sample of mothers during the course of their infants' hospitalization. This increase was most prevalent in the Grant group of mothers. 12. During the course of their infants' hospitalization, understanding the baby's problems became less of a problem for the entire sample of mothers due to NICU staff help. 13. The NICU staff, when rated on their helpfulness in dealing with the entire sample's biggest problems, were found to be most helpful with money problems. This is most likely due to the availability of the following: a) the CMS Grant to defray the infant's medical costs; b) a WATTS line for out-of-town mothers; c) ORMC special funds for transportation and lodging. 14. The NICU staff, when rated on their helpfulness in dealing with the entire sample's biggest problems, were rated as least helpful with the mother's concerns about praying for the baby, fear that the baby might die, or not

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-117believing what was happening. Ways must be found to give greater attention to these reactions. 15. The entire sample of mothers rated the NICU staff as most helpful with crying and being scared to take the baby home, even though these were only moderate problems for the sample. It may be that staff help prevented these problems from increasing in magnitude. 16. Thinking and dreaming about the baby initially rated as a large problem by the entire sample became less of a problem over time. Many of these mothers rated this not a problem requiring outside help. The mothers apparently found their own resources to be adequate. 17. Sadness, depression, and being in a bad mood all increased as problems during the course of the baby's hospitalization for the entire sample of mothers, in spite of what was perceived as adequate staff help. This finding seems to substantiate other studies which have found that a mother will proceed through certain grief reactions following the birth of a high risk infant. It appears the best that can be hoped for is that the staff can help minimize the discomfort which attends these reactions. 18. Immediately following the birth of their high risk infant, Grant mothers had more worries about money and their relationship to the baby's father than did No Grant mothers. At discharge, the Grant mothers did not have more money worries but still had more worries about their

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-118relationship to the baby's father than did the No Grant mothers. The Grant mothers found the staff to be very helpful with money worries but the staff could not help with them with their relationship to the baby's father. This appears to be one reason why a significant difference between the Grant and No Grant groups persisted on the post-evaluation on the item "relationship to the baby's father." 19. Overall, the _< 1500 gram group of mothers coped significantly better at discharge than they did at the time of the baby's admission. This subgroup showed the greatest rate of improvement. 20. Eating and understanding the baby's problems became less of a problem between admission and discharge for the _< 1500 gram group of mothers. This subgroup improved in these areas without feeling they needed staff help. 21. The > 1500 gram group of mothers found that wanting to be alone became more of a problem from admission to discharge, but they did not see it as a problem requiring staff help. 22. Worry that the baby might die diminished significantly from admission to discharge for the No Grant group. Yet it was the Grant group who indicated that they derived significantly more help from the staff with this problem. The older, more educated mothers in the No Grant group

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-119appear able to be more realistic in grasping the infant's condition with less help from the staff. 23. Two areas, being in a bad mood and visiting the baby, increased significantly as problems for the Grant group. A large number of these mothers did not feel that either of these problems were ones needing staff help. In spite of the mothers' perceptions, it would seem that the staff should pay more attention to helping the Grant mothers in these two areas. 24. The Grant group found that being afraid to see the baby became less of a problem for them from admission to discharge without staff help. 25. The mothers with the larger babies and the mothers on the Grant did not share their coping problems as freely as did the < 1500 gram mothers and the No Grant mothers. 26. The entire sample of mothers had a positive attitude about their baby at admission. This attitude was sustained at one month post discharge. The support given by the staff seems to have fostered the mothers' attachment behavior. 27. Significant increases occurred from admission to discharge in the entire sample's awareness of infant behavior and needs. This increase resulted from increases occurring within the Grant group. The low reliability coefficients of this instrument as well as the fact that the

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-120Grant group had the lowest maternal age and level of education makes it difficult to conclude that the increases in awareness came about as a result of staff intervention. The increases could be due to the instrument's low reliability or regression toward the mean. 28. Questions 13 and 15 on the instrument measuring Parent Understanding of Infant Behavior a nd Needs need to be rewritten so they will not be ambiguous. 29. The NICU staff needs to make mothers better aware of their infants' states of consciousness, visual abilities, and neurological status. Recommendations for Project Improvement 1. Staff services provided during the course of the baby's hospitalization and at discharge can be improved in specific areas. A way must be found to inform mothers about in-hospital and community services. Mothers should be provided with more information about their infants' states of consciousness, sensory abilities, and neurological status. Mothers also need to be shown how and when to play with and stimulate their babies. A system needs to be devised which will insure all mothers receive adequate discharge services. 2. Pastoral services should be periodically offered to mothers during the time the baby is hospitalized. 3. The NICU staff needs to become aware that money worries, being afraid the baby might die, sadness and not

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-121believing what is happening (shock) remain the most persistent problems facing the mothers. Strategies which may help the staff support the mothers more effectively need to be explored. 4. The NICU staff needs to realize that mothers will go through certain grief reactions such as sadness, being in a bad mood, and depression in spite of staff support. The staff should help mothers become aware that these reactions are normal, following the birth of a high risk infant, and should diminish with time. 5. The NICU staff should be made aware of those areas where they are most effective such as enabling the mother to proceed with positive attachment behavior. 6. Many mothers have the inner resources to cope with their problems with little support. The staff needs to be aware of the type of mother with these strengths. 7. There are some issues such as eating and understanding the baby's problem that do not require a great deal of staff support to be resolved. The staff should be aware of these areas so they can direct their efforts to more critical issues. 8. Differences do exist between Grant and No Grant mothers as well as between mothers of infants weighing < 1500 grams and those whose infants weigh > 1500 grams in the way each group copes and in the type of support each group

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-122needs. The staff should be made aware of the needs of each of the subgroups and should be prepared to meet these needs. Limitations 1. The sample used in this study were volunteers. The same results may not have occurred had it been possible to poll non-volunteers. 2. This was a descriptive study and not an experimental one. Therefore, the conclusions drawn are only tentative and should be regarded as indicative of hypotheses to be tested experimentally. 3. Factors other than staff intervention could account for the changes found between and within groups. 4. The sample used in this study was taken from the population of mothers whose infants were admitted to Orlando Regional Medical Center's Neonatal Intensive Care Unit. Conclusions and implications drawn from this study must be limited to populations similar to this sample. 5. The sample size was small. The results may have been more precise had the sample size been bigger. 6. The instrument used to measure parent understanding of infant behavior and needs had low reliability. Conclusions drawn from this part of the evaluation can only be tentative. Reccamnendations for Further Research 1. This study was descriptive in nature. Experimental procedures were not used. Studies using random assignment

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-123between groups need to be undertaken to verify many of the findings of this evaluation. 2. The components of the system of instruction and support developed at Orlando Regional Medical Center need to be evaluated in other hospital settings. 3. The effects of this system of instruction and support need to be measured on fathers. 4. This system of instruction and support needs to be compared with alternative systems developed at other hospitals . 5. Orlando Regional Medical Center's system of instruction and support should be re-evaluated after the recommended improvements are implemented. 6. An instrument with a stronger reliability coefficient should be developed to measure a parent's understanding of infant behavior and needs. 7. The Parent Coping Scale, an adaptation of the Benfield Leib Mother-Father Discharge Questionnaire (Benfield & Leib, 1976), yields excellent information about the responses of a parent following the birth of a high risk infant. This instrument is also highly reliable. More studies could be undertaken using this scale to track differences between parents' reactions as well as how parents' reactions change over time.

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-124Summary The major purpose of this study was to determine if a system of instruction and support developed for mothers of NICU infants at Orlando Regional Medical Center was effective. The minor purpose of this study was to determine if the intervention effects were the same for all types of mothers. The results indicated that the mothers were very satisfied with the support and instruction they were given by the NICU staff during the course of their infants' hospitalization. The mothers appeared more satisfied with the services offered them when the baby was admitted than those offered later on. improvements need to be made in several areas: 1) making available information about hospital and community services; 2) providing better information on an infant's states, sensory abilities, and neurological status; 3) teaching the mother how and when to play with and stimulate the baby; 4) effecting better discharge teaching and materials. Certain areas were found to present persistent coping problems for all of the mothers. These areas included: 1) praying for the baby; 2) money problems; 3) fear the baby might die; 4) sadness; 5) not believing what is happening (shock) . The staff was most helpful with money problems and least helpful with praying for the baby. The mothers found

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-125the staff to be very helpful when crying and being scared to take the baby home were problems. Both of these were rated as moderate problems, but the staff apparently kept them from becoming worse. The NICU staff also helped the mothers to better understand their baby's problems. There were some problems mothers had that did not warrant outside intervention. On their own, most mothers were able to cope with thinking and dreaming about the baby and visiting the baby. Typical grief reactions including sadness, depression and being in a bad mood increased significantly in spite of adequate staff support. This finding correlates with other research on grief reactions following the birth of a high risk infant. Differences in reactions were documented between mothers whose infants weighed < 1500 grams and mothers whose infants weighed > 1500 grams. Differences were also found between Grant and No Grant mothers. Therefore, different types of support are necessary, depending on which subgroup the mother belonged to. The staff was judged to be effective in meeting some of the special needs of each subgroup and ineffective in meeting others. The staff needs to be made more aware of what the special needs are. Of all the subgroups, the <^ 1500 gram group of mothers coped significantly better at discharge than any of the other subgroups. It is here the staff seemed to make its

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-126greatest impact. The staff was also very effective in helping the entire sample of mothers maintain a positive attitude toward their babies. It appears that the NICU staff may have been instrumental in increasing the entire sample's awareness of infant behavior and needs. However, this finding needs to be further substantiated. The test instrument had a low reliability coefficient: Moreover, the increase may have been due to regression toward the mean. Overall, the system of instruction and support for mothers of infants admitted to Orlando Regional Medical Center's Neonatal Intensive Care Unit was very effective. The mothers in the entire sample as well as in the subgroups under study were very satisfied with staff services; these services enabled them to better understand their infants' condition and care and to better cope. In addition, the staff appeared instrumental in fostering and continuing maternal attachment behavior and increasing maternal awareness of infant behavior and needs.

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APPENDIX A SUPPLEMENTARY TABLES -127-

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-128TABLE A-1 Background Data Entire Sample Mothers Total Number in Sample Demographic Data Mean age 26.2 yrs. Marital status Married 21 (70%) Single 5 (17%) Separated 2 ( 7%) Divorced 2 ( 7%) Race White 22 (73%) Black 6 (20%) Other 2 ( 7%) Mean educational level 12.5 yrs. Delivery Data Mean Gravida (pregnancies) 2.5 Mean Para (live births) 1.8 Mean Abortions (abortions, miscarriages. stillbirths) 1.2 Caesarean sections 12 (40%) Premature rupture of membranes 9 (30%) Premature labor 6 (20%) Placenta Previa or Placenta Abrupto 7 (23%) Other maternal risk factors 11 (37%) Psychosocial Support person present for delivery 26 (87%) Mean prenatal care visits 9.7 Previous child in NICU 6 (20%) Mean calls to NICU/week 12.5 Mean visits to NICU/week 7 Qualified for CMS Grant 19 (63%)

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-129TABLE A2 Background Data Entire Sample Infants Demographic Data Males Females Mean hospital stay Transferred prior to discharge Mean gestational age Size for gestational age Small Average Large Mean birth weight Mean birth length 17 13 (57%) (43%) 50.1 days 5 (17%) 33.5 weeks 11 (27%) 17 (57%) 1 ( 3%) 1672.6 grams 40.1 centimeters Risk Factors Mean 1 minute APGAR Mean 5 minute APGAR Clinically asphyxiated Intraventricular hemorrhage Congenital anamoly Very premature (£ 1000 grams) Premature (> 1000 grams £ 37 weeks gestation) Breech Meconium stained 4.4 6.2 20 (67%) 6 (20%) 2 (7%) 6 (20%) 10 (33%) 3 (10%) 6 (20%) Major Admitting Diagnosis (> 25% of Sample) Hyperbilirubinemia Hypotension/Shock Sepsis or Suspected Sepsis Other 8 10 18 12 (27%) (33%) (60%) (40%)

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-130TABLE A3 Parent Understanding of Infant's Condition and Care Results of Objective I for Entire Sample of 30 Mothers Percent of Entire Sample Who Found Percent of Subgroup Who Found Item Mean Score Entire Sample Not a Service Very Helpful or Helpful Very Helpful or Helpful <1500 >1500 Very Helpful or Helpful NG G Picture 3.4 0 87 O i Q "X 91 84 ExplanationsAppearance and Condition 3.7 3.3 87 81 93 100 79 Information Packet 3.6 0 93 88 100 100 89 ExplanationsVisits and Phone 3.6 0 90 87 93 100 84 ExplanationsEquipment and Care 3.5 3.3 87 O 1 ol y o 100 79 ExplanationsScrub and Gown 3.4 3.3 83 81 86 91 79 Services in Hospital 2.9 20 57 62 50 54 58 Services in Community 2.9 53 40 44 36 18 53 Importance of Visiting 3.6 0 7 6 81 93 Conference with Doctor o c o . o i i o U 75 86 /J 04 Play and Stimulation 3.5 43 63 63 43 45 58 Discharge Materials 3.1 24 69 80 57 82 61 Discharge Teaching 3.2 21 64 75 50 73 59 NEO-PIE Visits 3.5 86 13 12 14 9 16

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-134o C •H 4J c o u in I < (0 0 0 C O (— t Boo CM A r\ 00 \V ^ M in in n ro l 1 A . •H jj (1) ro ro C C m ID M (0 0 • • rt^ r \ s: u) 0 00 0 H d in m in in -J fx*. in 0 I t rt\ 1 1 1 1"^ CM t— ( ro 00 ^* lA (\j CO ^ (D 'H ^ a, 4J 0) 0 0) 0 z z 0 iT) 0 in 00 in 00 V > 1 rA c c u) >1 U. ID w 4J r* 1 ifft w in . . 0 1 I u f1^ t I »n ^ Tj U 1 1 4-' r\ r ^ 0 (J U (— ( , w M VJ ^ 1 1 jj r" ILJ jj C 0 VL' J 1 JJ c D •H CO CO •D SX M 4J •H c »J 0) 4J C (D x: m >i •r-t 0) >i U >. c 0 CO C (0 i3 (0 iH 0) -H •H 0 (0 C (0 0 (0 S (0 K 5 < x> > u 0 O XI CA i3

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-135TABLE A6 Objective IV Parent Understanding of Infant Behavior and Needs Test Item Analysis Number Answering Item Correct Out of Thirty Respondents Question Number IT 1. ^ ^ C O Post-Test * 1 17 22 * 2 25 18 23 23 23 24 5 26 29 6 25 27 * 7 15 14 8 29 28 9 18 25 10 28 30 11 25 30 12 25 26 ** 13 15 18 14 24 27 ** 15 13 20 16 27 24 17 22 27 18 29 28 * Area needs to be better taught by staff: Less than 75% of the sample passed the item on the post•test. ** Question appears ambiguous and needs to be reworded.

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APPENDIX B STUDY INSTRUMENTS This Appendix consists of: (1) Parent Understanding of the Infant's Condition and Care (Post-Evaluation Only). (2) Parent Understanding of Infant's Behavior and Needs (Preand Post-Evaluation). (3) Letter of Introduction to the NEO-PIE Study. (4) Consent to be in the NEO-PIE Study. (5) Letter sent with Post-Evaluation Packet. -136-

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-137Code No. Objective I PARENT UNDERSTANDING OF THE INFANT'S CONDITION AND CARE Post-Evaluation Only DIRECTIONS: Please circle the answer that is closest to the way you feel. DID THE FOLLOWING HELP YOU TO BETTER UNDERSTAND WHAT WAS HAPPENING TO YOUR BABY WHEN THE BABY WAS IN THE HOSPITAL? 1. The picture of the baby was: (a) Very helpful. (b) Helpful. (c) Not helpful. (d) Confusing. (e) Other (please explain 2. The materials the NICU staff brought when the baby was admitted were: (a) Very helpful. (b) Helpful. (c) Not helpful. (d) Confusing. (e) Other (please explain '

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-138(f) What material was most helpful to you' 3. The explanations the NICU staff gave about the baby's appearance and condition were: (a) Very helpful, (b) Helpful. ( c) Not helpful. ' ' • '•• (d) Confusing. (e) Other (please explain 4. The explanation the NICU staff gave about NICU visiting and phoning policy was: (a) Very helpful. (b) Helpful. (c) Not helpful. (d) Confusing. (e) Other (please explain 5. The information the NICU staff gave about NICU care and equipment was: (a) Very helpful. (b) Helpful. (c) Not helpful. (d) Confusing. (e) Other (please explain 6. The explanation the NICU staff gave about handwashing and gowning was: (a) Very helpful.

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-139(b) Helpful. (c) Not helpful. (d) Confusing. (e) Other (please explain 7. The information the NICU staff gave about the services available in the hospital (NEO-PIE, baby care classes, chaplain, social worker, etc.) was: (a) Very helpful. (b) Helpful. (c) Not helpful. (d) Confusing. (e) Other (please explain (f) What hospital services did you use?_ 8. The information the NICU staff gave about services available in the community (Children's Medical Services, Mental Health, WIC, etc.) was: (a) Very helpful. (b) Helpful. (c) Not helpful. (d) Confusing. (e) Other (please explain (f) What community services did you use? 9. The information the NICU staff gave on the importance of visiting the baby often was: (a) Very helpful.

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-140(b) Helpful. (c) Not helpful. (d) Confusing. (e) Other (please explain 10. The conferences held with the doctor and other NICU staff were: (a) Very helpful. (b) Helpful. (c) Not helpful. (d) Confusing. (e) Other (please explain (f) There were no conferences held. 11. Being shown how to play with and stimulate the baby was! (a) Very helpful. (b) Helpful. (c) Not helpful. (d) Confusing. (e) Other (please explain (f) I was not shown how to play with the baby. 12. The materials given me by the NICU staff when the baby was discharged (discharge book, book on growth and development, book on feeding, etc.) were: (a) Very helpful. (b) Helpful. (c) Not helpful.

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-141(d) Confusing. (e) Other (please explain (f) What material was most helpful? 13. The information given me by the NICU staff at discharge (appointments for follow-up, the importance of regular medical check-ups, the purpose of the Neonatal Follow-Up Clinic, etc. ) was: (a) Very helpful. (b) Helpful. (c) Not helpful. (d) Confusing. (e) Other (please explain (f) Please list the follow-up appointments that were made for you 14. The home visits by the NEO-PIE infant educator after the baby's discharge were: (a) Very helpful. (b) Helpful. (c) Not helpful. (d) Confusing. (e) Other (please explain (f) There were no home visits. 15. Below please tell us what other things the NICU staff could have provided to better help you understand your baby's condition and care.

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-142Code No. Objective IV PARENT UNDERSTANDING OF INFANT'S BEHAVIOR AND NEEDS Pre and Post-Evaluation DIRECTIONS: Please circle "T" if you think the sentence is true or "F" if you think the sentence is false. 1. Babies are either awake or asleep. There are no in-betweens. T F 2. Newborns cannot see objects or faces until they are 1-2 months old. T F 3. Newborns can hear sounds and locate the general direction of the sound at 1 day of age. T F 4. Newborns will suck on their fingers or fist in an effort to quiet themselves. T F 5. The only way a parent can quiet a crying baby is to pick him/her up. T F 6. It is normal for premature babies to have jerky movements and tremors. T F

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-1437. It is normal for a premature baby to stop breathing for short periods of time. T F 8. When visiting your baby in the intensive care unit, it is not good to touch and stroke your baby. T F 9. Newborns appear to prefer the high pitched sound of their mother's voice. T F 10. Newborns are born with individual personalities. T F 11. Newborns are born with certain reflexes which help ensure their survival. T F 12. Newborns are not aware of their surroundings. T F 13. Babies are very fragile. T F 14. Babies are able to communicate their needs. T F 15. Babies should be kept in a quiet, protected environment. T F 16. A newborn baby uses his arm and leg movements for a reason. T F

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-14417. A baby learns best when he is quiet and alert. T F 18. Newborns may differ in how they behave when they are held.

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-145LETTER OF INTRODUCTION TO THE NEO-PIE STUDY Dear In an effort to provide more complete care to you and your baby, families of newborn babies are being offered a special program called NEO-PIE (Neonatal Parent Infant Education). This program will include parent support and special teaching about your baby's development. This program will begin as soon as your baby is admitted to the intensive care unit and will continue until discharge or beyond. In order to find out how helpful this program is, we are asking you to complete two sets of questionnaires at two different times. You don't need to complete these questionnaires to become part of the NEO-PIE program. However, if you do, we will be better able to help parents and babies in the future. We will ask you to complete the questionnaries before your discharge from the hospital and again one month after your baby goes home. Your answers will be kept confidential -we don't need your name. Thank you for your time and effort in completing these questionnaires. Sincerely, NICU Staff

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-146Code Number CONSENT TO BE IN THE NEO-PIE STUDY I have read and understand the attached "Letter of Introduction" to the NEO-PIE questionnaires. My questions have been answered to my satisfaction by a member of the ORMC-NICU staff and I understand that any questions I may have later on will also be answered. I hereby give my permission for my answers to be included in this study. Any information gained may be used for the purposes of teaching and research. I understand that my name will not be used and that I may withdraw my permission at any time. Witness Parent Date

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-147Dear : As hard as it might be to believe, your baby has been home from the hospital just about a month. Congratulations! Thank you for agreeing to be part of a study being conducted at Orlando Regional Medical Center on Mothers of Newborn Intensive Care Infants. The forms you completed when your baby was first admitted were only the first part of the study. Now that your baby has been home for a month, we are asking you to complete the second and final part. Unless this second part is completed, we will not be able to evaluate the care you and your baby received. Please fill out the enclosed questionnaires as soon as possible and return them in the stamped, self-addressed envelope we have provided. We appreciate the extra time and effort you have given in helping us with this study. Your responses will be used to help us help other parents. If you have any questions about how to complete these forms, please feel free to call me at (305) 841-5111. Ask the operator to beep Linda Stone at #140. Please be assured that your answers will be kept completely confidential. Sincerely yours, Linda L. Stone Parent Counselor Neonatal Intensive Care Unit

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-149Special Newborn leaf^?65^^ °^ sequence: it follows

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-150Enfamil Enfamil Infant Formula WITH IRON Infant Formula Milk-free Formula With Soy Protein Isolate ORLANDO REGIONAL MEDICAL CENTER NEONATAL INTENSIVE CARE STAFF GREGOR ALEXANDER, M.D. Director, Newborn Services BRIAN LIPMAN M.D Associate Director. Newl>orn Services SHERRI SITARIK, R.N., B.S.N. Head Nurse NICU CHRISTY STEVENS, R.R.T. Respiratory Therapy Section Head NICU LINDA STONE Parent Counselor NICU To reach the N.I.C.U., please phone (305) 841-51 11, extension 5566. If you live outside the Orlando calling area, please ask us how to phone about your baby. UiniiiiJii NUTRITIONAL DIVISION LF64-7«

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-151Your premature infant

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-152QUESTIONS TO ASK THE DOCTOR ROSS LABORATORIBS ^W COLUMBUS, OHO 43216 I ROB8| OiviOiOfM OF ABSOTT LABOnATtamcS. USA G329. AUGUST, 1977 LITHO IN U S A

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-153Nailonal InstKut* of Menial Health Pre -iem babies ^*^i..'»:/>J'ifn' U S DEPARTMENT OF WEALTH AND HUMAN SERVICES Public HeaUh Service otnviwro Alcohol, Drug Abuse, and Menial Health Administration

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-154Nrttooal ins«tut0 of Mental Health AJoohol. Or«o Aboa^ and Menial Hertlh Admbhta^

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ORLANDO REGIONAL MEDICAL CENTER Dear Parent: This letter is to introduce you to my services as Neonatal Intensive Care Unit Parent Counselor. As you probably know by now, your new baby has been admitted to the Orlando Regional Medical Center's (ORMC) Neonatal Intensive Care Unit (NICU). We certainly understand that, at this point, you must be very concerned about your baby. It is through this letter that we hope to answer some of your questions and to encourage you to make use of all of the services available to you, both while your baby is in the hospital and after you take him or her home. In the United States, one out of every thirteen babies is born too early, is of too low a birth weight, or is too sick to be able to function well enough to handle vital life functions without help. When this happens, the baby is placed in the NICU, where he/she receives the very latest and very best medical support until he/she is able to go home . The doctors, nurses, respiratory therapists, and other health professionals attending your baby in the OR.MC-NICU are specially trained in caring for newborn babies and are totally dedicated to the well-being of your baby. When you visit your baby in the NICU, you will see them working with complicated equipment to provide life support for your baby until he/she matures enough to maintain these functions alone. A handbook has been included which will tell you more about the NICU and the equipment being used. In addition, a photo album is available which also describes the NICU facilities. Along with the medical staff, you and your baby will have the opportunity to be served by me as Parent Counselor. My job is to provide you with information and other services which parents of other NICU infants have told us nelped them through this difficult time. These services, which include parent support as well as training in infant intervention techniques are offered at absolutely no cost to you. One of our main goals is to assist parents in becoming 1414 SOUTH KUHL AVENUE • ORLANDO. FLORIDA 32806 . ,305i 841-5111

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-156page 2 as active as possible, as early as possible, in taking care of their babies, even though their babies may be hospitalized. Should you wish to meet with me, I can be reached in one of several ways. My office is located on the fourth floor of the Orange Division of ORMC, across from Room 400. My phone number is 341-5111, ext 5978. I also carry Beeper Number 140, and the hospital operator or a member of the NICU staff will be glad to beep me for you. My regular hours are from 8:00 a.m. to 4:30 p.m. However, should these times not be convenient for you, special appointment times will be made. Please remember, all of the NICU staff are here to help you over the "rough spots" and we want to see you enjoy your baby as much as possible, as soon as possible. Again, we understand that this is a difficult and stressful time for you and we want you to know that we care and will be available to you whenever you need us. Sincerely, Linda L. Stone, M.Ed. Parent Counselor Neonatal Intensive Care Unit Orlando Regional Medical Center LLS:sb

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-157Suggested Books For Parents The following list of references may be helpful to you as a parent. This list does not represent all the books which are available or that are worthwhile. However, it should provide you with a beginning. Many of these books are already on the shelves in bookstores such as B. Dalton, Walden Books, and Little Professor. They can be found in the child care sections. If you do -not find the book that you want, any of these stores will be glad to order them for you. A n;amber of these are also available at the area public libraries . 1. Barr, E. and Monserrat, C. Teenage Pregnancy; A New Beginning . Albuquerque: New Futures, 19 78. 2. Berezin, Nancy. After A Loss In Pregnancy . New York: Simon and Schuster, 19 82. 3. Borg, Susan & Lasker, Judith. When Pregnancy Fails . Boston: Beacon Press, 1981. k • ' ' 4. Brazelton, T. Berry. Infants and Mothers: Differences In Development . New York, Dell, 1969 . 5. Brazelton, T. Berry. On Becoming A Family; The Growth Of Attachment . New York: Delacorte Press/Seymour Lawrence, 1981. 6. Brenner, E. A New Babyl A New Life ! New York: McGraw-Hill, 19 73. 7. Colen, B.D. Born At Risk . New York, St. Martin's Press, . 1981. 8. Caplan, Frank. The First Twelve Months of Life . New York, Bantam, 1978. 9. Diagram Group. Child's Body: A Parents Manual. New York: Bantam Books, 1977. 10. Dotson, Fitzhugh. How To Parent . Los Angeles: Nash Publishing Co. , 1975"! 11. Fraiberg, S. The Magic Years . New York: Charles Scribner's Sons, 196 8. 12. Gordon, Ira. Baby Learning Through Baby Play , 1970. 13. Infant Development Guide . Somerville, New Jersey: Johnson & Johnson, 1978.

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-158-214. Koch, Jaroslaw. Total Baby Development . New York: Pocket Books, 1976. 15. Koschnick, K. Having A Baby . Syracuse, Nev/ York: New Readers Press, 1979. . 16. Levy, Janine. The Baby Escercise Book for The First Fifteen Months . New York: Pantheon Books, 1975. 17. *Nance, Sherri. Premature Babies A Handbook for Parents . New York: Arbor Publications , 1982 . 18. Pryor, Karen. Nursing Your Baby . New York: Pcketbooks, 19 76. 19. Sniff, Harriet Sarnoff. The Bereaved Parent , 1977. 20. Therovix, Rosemary T. & Tingley, Josephine F. The Care of Twins : Commonsense Guide for Parents , 1978. 21. White, Burton. The First Three Years of Life . New York: Avon Books, 1975. *Particularly helpful to parents of premature infants.

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-159f .:.: Jf~' OPMC NICU . . 'V DEVELOiWENTAL INTERVENTION PLAN Week Of For DOB fty cxmpetencies are: These things stress me: How I show stress: What I like to do: How you can help me: C. Age G. Age P.C. Age Weight " Length H.C. Developmental Stage

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-160NEONATAL INTENSIVE CARE UNIT (NICU) ORLANDO REGIONAL MEDICAL CENTER (ORMC) SUBJECT: Long Distance Calls From Areas Outside Orlando. ' Dear Parent: to be able to olu tSa «Trn ,t outgoing calls only. We want you asung you ^ ^IL'^S.^^^^l^ ^Su^^^lnf J°."Hec.^^orrou^/ bary ^^-^ .^^-^-\--=Te/~ — ' w?u ia J M„ K ''^"^ "^'^^ -^19" now, but we yoir pho'n'e'nlb^e'r.'" ""1 «^ you 'to lea^: arrilin^g! °' '^he phone from where you ee': :rn"tes"""' °' "^^^ ba=. within a If you have any questions, please feel free to ask us. Linda stone, M.Ed. Parent Counselor/NICU 3. 4.

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-161INTERVENTION LOG Today's Baby's Name Date Began Ended Tine of Last Feeding Intervention Time Interventionist States Available to Baby Parent was Present? No Yes Observed Participated Type Of Intervention Baby's Response

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-162% BRONCHOPULMONARY DYSPLASIA A HANDBOOK FOR PARENTS ORLANDO REGIONAL MEDICAL CENTER NEONATAL INTENSIVE CARE UNIT Prepared By: Brian Lipman, M.D. Associate Director of Newborn Services Linda Stone, M.Ed. Parent Counselor/NICU

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-163INTRAVENTRICULAR HEMORRHAGE IN THE PREMATURE INFANT Information For The Family PREPARED BY: Brian Lipman, M.D. Associate Director Newborn Services Orlando Regional Medical Center 1414 S. Kuhl Avenue Orlando, Florida 32806 Linda Stone, M.Ed. Parent Counselor Orlando Regional Medical Center 1414 S. Kuhl Avenue Orlando, Florida 32806

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-164THE FROG FAMILY'S BABY DIES BY JERRI OEHLER ILLUSTRATED BY KATHERINE SHELBURNE DUKE UNIVERSITY flED I CAL CENTER 1978

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-165THE FROGS HAVE A BABY. A VERY SMALL BABY By Jerri Oehler Illustrated By Katherine Shelburne Duke University Medical Center 1978 r

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REFERENCES Ainsworth, M.D.S., & Bell, S.M. Mother-infant interaction and the development of competence. In K.S. Connolly and J.S. Brunner (Eds.), The growth of competence . New York: Academic Press, 1973. Apgar, V., & James, L.S. Further observations on the newborn scoring system. American Journal of Diseases of Children, 1962, 104, 419. Barnard, K. Discussion, nursing research and implications. In G.C. Anderson and B. Raff (Eds.), Newborn behavioral organization . New York: Alan R. Liss, 1979. Barnett, C.R., Leiderman, P.H., Grobstein, R. , & Klaus, M.H. Neonatal separation: The maternal side of interactional deprivation. Pediatrics , 1970, 45 , 197-205. Benfield, P.G., & Leib, S.A. Father-mother discharge guestionnaire . Akron, Ohio: The Children's Hospital of Akron, 1974. Benfield, P.G., Leib, S.A., & Reuter, J. Grief response of parents after referral of the critically ill newborn to a regional center. New England Journal of Medicine, 1976, 294, 975-978. Brazelton, T. B. Neonatal behavioral assessment scale ( Clinics in Developmental Medicine , No. 50). London: Spastics International Medical Publications, Wm. Heinemann, Ltd., 1973a. Brazelton, T.B. The effect early infant behavior. Care, 1973b, 2, 259-273. of maternal expectations on Early Child Developmental Broussard, E., & Hartner, M. Further considerations regarding maternal perception of the first born. In Jerome Hellmuth (Ed.), Exceptional infant; studies in abnormalities (Vol. 2). New York: Brunner Mazel, Inc., 1971. -166-

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-167Broussard, E., 8. Hartner, M. Further considerations regarding maternal perception of the first born. In Jerome Hellmuth (Ed.), Exceptional infant; Studies in abnormalit ies (Vol. 2). New York: Brunner Mazel, Inc. , 1971. Campbell, D.T., & Stanley, J.C. Experimental and quasiexperimental designs for research. In N.L. Gage (Ed.), Handbook of research in teaching . Chicago: Rand McNally, 1963. Caplan, G. Patterns of parental response to the crisis of premature birth. Psychiatry , 1960, 23, 365-374. Caplan, G. , Mason, E., & Kaplan, D. Four studies of crises in parents of prematures. Community Mental Health Journal , 1965, 1, 149-161. Caputo, D., Goldstein, K. , & Taub, H. The development of prematurely born children through middle childhood. In T. Field, A. Sostek, S. Goldberg, & H. Shuman, (Eds.), Infants born at risk . Jamaica, New York: Spectrum Publications, 1979. Drillien, CM. Physical and mental handicap in the prematurely born. Journal of Obstetrics and Gynecology , 1959, e±, 721. Drillien, CM. Incidence of mental and physical handicaps in school-age children of very low birthweight. Pediatrics , 1961, TJ, 454. Drillien, CM. The growth and development of the pre maturely born infant . Baltimore, Maryland: The Williams & Wilkens Co., 1964. Erikson, M.L., Assessment and management of developmental changes in children . St. Louis: C.V. Mosby Co., 1976. Erikson, M.L. Trends in assessing the newborn and his parents. Maternal Child Nursing , 1978, 3(2), 99-103. Farnaroff, A.A. , & Kennel, J.H. Followup of low birthweight infants: The predictive value of maternal visiting patterns. Pediatrics , 1972, £9, 288-290. Field, T. Effects of early separation, interactive deficits, and experimental manipulations on infantmother face to face interaction. Child Development , 1977, 48, 763.

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-168Goldberg, S. Premature birth: consequences for the parentinfant relationship. American Scientist , 1979, 6_7, 214-219. Grant, P. Psycho-social needs of families of high risk infants. Family and Community Health , 1978, 3^, 91-102. Kaplan, D.N., & Mason, E.A. Maternal reactions to premature birth viewed as an acute emotional disorder. American Journal of Orthopsychiatry , 1960, 30, 539-552. Klaus, M.H., Jerauld, R. , Kreger, N., McAlpine, W. , Steffa, M., & Kennell, J.H. Maternal attachment: importance of the first post-partum days. New England Journal of Medicine, 1972, 28^, 460-463. Klaus, M.H., & Kennell, J.H. Mothers separated from their newborn infants. Pediatric Clinics of North America , 1970, 17, 1015-1037. Leonard, M.F., Rhymes, J.P. , & Solnit, A.J. Failure to thrive in infants. American Journal of Diseases of Children , 1966, 111 , 600-612. Lewis, M. , & Goldberg, S. Perceptual-cognitive development in infancy: A generalized expectancy model as a function of the mother-infant interaction. Merrill-Palmer Quarterly , 1969, l_5f 81-100. Martin, M., & Gray, C.A. Neonatal behavioral capacities and mother infant interactions in term and premature infants . Paper presented at meetings of the Society for Research in Child Development, Westner Division, San Francisco, California, February, 1978. Moss, H.A. , & Kagan, I. Maternal influence on early IQ scores. Psychological Report , 1958, 4^, 655. Osofsky, H.J. , & Kendell, N. Poverty as a criterion of risk. Clinical Obstetrics and Gynecology , 1973, 16 , 106-109. Powell, L.M. The effect of extra stimulation and maternal involvement on the development of low-birthweight infants and on maternal behavior. Child Development , 1974, 45, 106-113.

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-169Rubenstein, J., & Pederson, F. Dimensions of early stimulation and their differential effects on infant development. Merrill-Palmer Quarterly , 1972, 1^, 205-218. Scarr-Salapatek, S., & Williams, M.S. The effects of early stimulation on low birthweight infants. Child Development , 1973, _44, 94-101. Seashore, M.H., Leifer, A.O., Barnett, C.R., & Leiderman, P.H. The effects of denial of early mother-infant interactions on maternal self-confidence. Journal of Personality and Social Psychology , 1973, 26^, 369-378. Sigman, M., & Parmelee, A. Longitudinal evaluation of the preterm infant. In T. Field, A. Sostek, S. Goldberg, & H. Shuman, (Eds.), Infants born at risk . Jamaica, New York: Spectrum Publications, 1979. Stern, D. Mother and infant at play: the dydatic interaction involving facial, vocal and gaze behavior. In M. Lewis and L. Rosenblum (Eds.), The effects of the infant on its caregiver . New York, John Wiley & Sons, 1974. Thorndike, R.L., & Hagen, E.P. Measurement and evaluation in psychology and education (4th ed. ) . New York: John Wiley & Sons, 1977. Waisbren, S. Parents' reaction after the birth of a developmentally disabled child. American Journal of Mental Deficiency , 1980, 84, 345-351. Widmayer, S.M., & Field, T.M. Effects of Brazelton demonstrations on early interactions of preterm infants and their teenage mothers. Infant Behavior and Development , 1980, 3, 79-89. Widmayer, S.M., & Field, T.M. Effects of Brazelton demonstrations for mothers on the development of preterm infants. Pediatrics , 1981, 61_, 711-714. Yarrow, L.J. Separation from parents during early childhood. In L.W. Hoffman and M.L. Hoffman (Eds.), Review of child development research (Vol. 1). New York: Russell Sage Foundation, 1964.

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BIOGRAPHICAL SKETCH Linda L. Stone was born Dece"
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-171until 1979. In 1979, she became a coordinator for a United States Department of Education grant, the purpose of which was to provide psychological services to parents of infants in intensive care. This grant was under the auspices of Orange County public schools. Currently, Mrs. Stone is working at Orlando Regional Medical Center as a psychologist in the Neonatal Intensive Care Unit. Her duties include counseling, developmental assessment, and psychological evaluation. Mrs. Stone received her Doctor of Philosophy degree from the University of Florida in December, 1983.

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I certify that I have read this study and that in my opinion it conforms to acceptable standards of scholarly presentation and is fully adequate, in scope and quality, as a dissertation for the degree of Doctor o/. Philosophy. Gordon Lawrence, Chairman Professor of Instructional Leadership and Support I certify that I have read this study and that in my opinion it conforms to acceptable standards of scholarly presentation and is fully adequate, in scope and quality, as a dissertation for the degree of Doctor of Philosophy. Charles Dziuban^f Professor of Instructional Leadership and Support I certify that I have read this study and that in my opinion it conforms to acceptable standards of scholarly presentation and is fully adequate, in scope and quality, as a dissertation for the degree of/Doctor of Philosophy. Paul George Professor of General Teacher Education I certify that I have read this study and that in my opinion it conforms to acceptable standards of scholarly presentation and is fully adequate, in scope and quality, as a dissertation for the degree of Doctor of Philosophy. Aharon Hiett Associate Professor of Instructional Leadership and Support

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I certify that I have read this study and that in my opinion it conforms to acceptable standards of scholarly presentation and is fully adequate, in scope and quality, as a dissertation for the degree of Doctor of Philosophy. Assistant Professor of Pediatrics This dissertation was submitted to the Graduate Faculty of the Division of Curriculum and Instruction in the College of Education and to the Graduate Council, and was accepted as partial fulfillment of the requirements for the degree of Doctor of Philosophy. December, 1983 Chairman, Curriculum Instruction Dean for Graduate Studies and Research