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THE CHARACTERISTICS OF NEONATAL INTENSIVE CARE UNIT

VOLUNTEER SUPPORT PARENTS, THEIR LEVEL OF PROGRAM INVOLVEMENT
AND THEIR PERCEIVED EFFECTS OF PROE%AM PARTICIPATION
. presen e y

Lee Anne Roman

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THE CHARACTERISTICS OF NEONATAL INTENSIVE CARE
UNIT VOLUNTEER SUPPORT PARENTS, THEIR LEVEL
OF PROGRAM INVOLVEMENT AND THEIR

PERCEIVED EFFECTS OF PROGRAM PARTICIPATION

BY

Lee Anne Roman

A THESIS

Submitted to
Michigan State University
in partial fulfillment of the requirements

for the degree of

MASTER OF SCIENCE

IN NURSING

College of Nursing

1986

 

ABSTRACT

THE CHARACTERISTICS OF NEONATAL INTENSIVE
CARE UNIT VOLUNTEER SUPPORT PARENTS,
THEIR LEVEL OF PROGRAM INVOLVEMENT AND

THEIR PERCEIVED EFFECTS OF PROGRAM PARTICIPATION

BY

Lee Anne Roman

A descriptive study of Neonatal Intensive Care Unit
(NICU) volunteer support parents was conducted. A
convenience sample of nineteen mothers and nine fathers,
who volunteered to be support parents, were surveyed using
self administered instruments“ A. scaled instrument. was
developed to measure parents' perceptions of the effects of
participation. Data were analyzed using descriptive
statistics.

Most of the volunteers were married, white, and
reported infant health and caretaking problems post NICU
discharge, no access to support parents, and current worry
about psychosocial problems of their NICU involved child.
Mother volunteers reported a wide range of hours of program

involvement. Fathers' level of involvement data was

Lee Anne Roman

incomplete. The majority of parents reported more program
resources than demands as effects of their participation.

Nurses working with volunteer parents must carefully assess
the demands and resources of the parent support role, so to

safeguard the well-being of the volunteer parent and family.

To Marcia Eager
Nurse, scholar, advocate, and mentor
Passionate caregiver
to mothers and fathers of premature and sick infants

for thirty-one years

The privilege was mine

an unexpected gift during graduate study

iv

ACKNOWLEDGEMENTS

Special gratitude is extended to Clare Collins, thesis
director, who asked hard questions at precisely the right
time. Her assistance in helping me organize and focus the
research,when I was enmeshed in great sweeping thoughts, was
especially appreciated. Her enthusiasm and encouragement
for parent support research enabled completion of the
project. Thanks to my Committee members, Barbara Given,
Mildred Omar, and Patricia Peek for their individual
contributions to this study and for their willingness to
help me meet critical deadlines.

Sincere appreciation is extended to Robert P. Boger,
Director of the Institute for Family and Child Study, for
the opportunity to gain experience in all aspects of the
research process by managing the NICU/Perinatal Positive
Parenting Demonstration Program. The Children's Trust Fund
of Michigan provided financial resources to support the
demonstration and evaluation of the NICU Perinatal Positive
Parenting Program.

It was a special privilege to have the opportunity to
work with the NICU/PPP volunteer parents over the past two
years. The parents' enthusiasm, caring and commitment to

helping others energized all who were involved in the

program. I am also grateful to the staff of the Butterworth
Hospital Neonatal Intensive Care Unit, especially Mary
DeWys, NICU/PPP nurse coordinator, Marcia Eager, NICU
Assistant Department Head, and Judy Ferdig, NICU Outreach
Coordinator.

Special thanks to Bruce Haas, colleague and friend, for
data analysis assistance, and for facilitating my tenuous
relationship with the computer. Barbara Taylor and
Jim Roman transformed thesis rough drafts from computer
disks into acceptable manuscripts. My colleagues at the
Institute for Family and Child Study provided the smile, the
hug, the helping hand with the copier or computer, or the
fresh cup of coffee, at the most desperate hour. Additional
support was provided by Jarrett DeWys, O.P., D.Div., who
went first, and Judy Leatherwood Smith, B.S.N., who changed
routes.

Thanks to my mother, Josephine Perry Walsh, whose help
with the children and household tasks was most appreciated.
Special acknowledgement is made to the memory of my father,
Leo R. Walsh, whose love for learning was a special legacy.

Very special appreciation is extended to my husband,
James Patrick, and sons, Timothy James and Brian Matthew
Roman. Their love, support and laughter are treasured gifts

that make all things possible.

vi

TABLE OF CONTENTS

CHAPTER PAGE

LIST OF TABLES O O O O O O O O O O 0 O O O O O I I O O Xiii

LIST OF FIGURES O O O O O O O I O O O O O O O O O O O O 0 mi

CHAPTER ONE - THE PROBLEM . . . . . . . . . . . . . . . 1
Introduction . . . . . . . . . . . . . . . . . . . . 1
Background of the Problem . . . . . . . . . . . . . . 3

Purpose of the Study . . . . . . . . . . . . . . . . 11
Research Questions . . . . . . . . . . . . . . . . . 11
Definitions . . .i. . . . . . . . . . . . . . . . . . 12
Assumptions . . . . . . . . . . . . . . . . . . . . . 16
Limitations of the Study . . . . . . . . . . . . . . 17
Significance of the Study . . . . . . . . . . . . . . 18
CHAPTER II - CONCEPTUAL FRAMEWORK . . . . . . . . . . . 20
Introduction . . . . . . . . . . . . . . . . . . . . 20
Family Ecological Framework . . . . . . . . . . . . . 22
The Family Members as the Family Unit . . . . . 23

The Environment of the Family . . . . . . . . . 26
Transactions between Family and Environment . . 27

Summary of Family Ecological Framework . . . . . . 31

vii

Chapter

Application of the Family

Ecological Framework to the Study

Background Characteristics

Level of Involvement . .

Effects of Participation .

Roberts Nursing Model .

summary 0 O I O O O O O O O 0

CHAPTER III - LITERATURE REVIEW .

Introduction . . . . . . . .

The Period of the NICU

Event: Demands and Resources .

The early years after the

NICU event: Resources and Demands

The Period of Volunteer

Helping: Demands and Resources

summary 0 O O O O O O O O O 0

CHAPTER IV - METHODOLOGY . . .
Overview . . . . . . . . . .

Study Design . . . . . . . .

Operationalization of Study Variables

Instrument Development . . .

viii

Page

32
33
38
38
45

52

53

53

55

65

83

96

98
. 98
. 98
. 99

104

Chapter

Background Questionnaire: Current Family
Related and NICU Historical Characteristics .
Level of Involvement Questionnaire . . . . .

Effects of Participation Scale . . . . . . . .

Reliability and Validity of Perceived Effects Scale .

Scoring . . . . . . . . . . . . . . . . . . . . . .
Pre-test of the Questionnaire . . . . . . . . . . .
Setting . . . . . . . . . . . . . . . . . . . . . .
Sample . . . . . . . . . . . . . . . . . . . . . .
Data Collection Procedures . . . . . . . . . . . .
Data Analysis Plan . . . . . . . . . . . . . . .

Protection of the Rights of Human Subjects . . . .

summary 0 O O I O O O O O O O O O O O O O O O O 0

CHAPTER V DATA PRESENTATION AND ANALYSIS . . . .
Overview . . . . . . . . . . . . . . . . . . .
Pretest of the Study Instruments . . . . . . . .
Questionnaire Return . . . . . . . . . . . . . .
Study Results . . . . . . . . . . . . . . . . . .

Question One: What are the background
characteristics of NICU support parents? . . .

Demographic Characteristic . . . . . . .

ix

Page

. 105
107
109
113
115
116
. 116
. .117
. 121
. 122

125

126

. 127
. 127
. 128

129

130

. 130

130

Chapter

Characteristics of the Mother Volunteers'

Experience 0 o o . '0 o o o o o o o 0

Question Two: What was volunteer

parents'level of involvement? . . . . .

Question Three:

Fathers' Involvement . . . . . . .

Mothers' Involvement . . . . . . .

perceived effects of participation? . .

Summary .

Psychometric Investigation of the

What are volunteer parents

Effects scale 0 O O I O O O O O O O O 0

Reported Effects of Participation by All

Volunteer Parents . . . . . . . . .
Mother volunteers Effects . . . . .
Father Volunteers Effects . . . . .

Open-ended Responses to Effects of
Participation . . . . . . . . . . .
Response to Global Item on Program

Resources and Demands . . . . . . .

CHAPTER VI SUMMARY AND CONCLUSIONS . . . . . .

Overview

Research questions . . . . . . . . . . . . .

Page

NICU

. 135

150

. .151

. .152

. 155

. 156

157

. 158

162

O 163

. 167

. 169

170
. 170

. 171

Chapter . Page

Question One: What are the background

characteristics of NICU volunteer

support parents? . . . . . . . . . . . . . . . . 171
Demographic Characteristics . . . . . . . . 171
Family Related Characteristics . . . . . . 173
NICU Historical Characteristics . . . . . . 175

Question Two: What is the NICU support

parent's level of involvement in support program
activities? . . . . . . . . . . . . . . . . . . 178
Question Three: What do NICU volunteer support

parents identify as perceived effects of their

involvement in the support program? . . . . . . 181
Program Resource Effects . . . . . . . . . 182
Program Demand Effects . . . . . . . . . . 189
Summary of Program Resources/Demands . . . 19o

Volunteer Support Family: A Family

Ecological Perspective . . . . . . . . . . . . . . . 190
The Family Unit . . . . . . . . . . . . . . . . 191
The Environment of the Volunteer Support
Parent . . . . . . . . . . . . . . . . . . . . . 193

Transactions: Volunteer Parents and the

Support Program . . . . . . . . . . . . . . . . 195
Summary and Conclusions: Research . . . . . . . . . . 196
Effects of Participation Scale . . . . . . . . . 196

xi

Chapter

Recommendations of Further Research . . .
Summary and Conclusions:. Nursing Practice and
Education . . . . . . . . . . . . . . . . . . .

Client Needs . . . . . . . . . . . . . . .

Needs Assessment . . . . . . . . . . . . .

Nursing Responses . . . . . . . . . . . .
Conclusion . . . . . . . . . . . . . . . . . .

APPENDIX A - Risk Factors . . . . . . . . . . . .
APPENDIX B - Study Instruments . . . . . . . . .
Demographic Background . . . . . . . . . . . .
NICU Historical-Family Background . . . . . . .
Volunteer Parent (Effects Scale) . . . . . . .
Level of Involvement (Activity Survey) . . . .
APPENDIX C - Material . . . . . . . . . . . . . .
Human Subjects Review . . . . . . . . . . . . .
Consent Forms . . . . . . . . . . . . . . . . .
Letter to Participants . . . . . . . . . . . .

RE FERENCE S O O O O O O O O O O O O O O O O O O O

xii

Page

198

201
203
206
210
218
219
220
220
222
227
232
235
234
235
236

237

Table

5.

6.

10.

LIST OF TABLES
Page

Age Distribution of Volunteer Mothers (n= 19) and
Fathers (n - 9) . . . . . . . . . . . . . . . . 131
Educational Level of Volunteer Mothers (n - 19) and
Fathers (n - 9) . . . . . . . . . . . . . . . . 131
Family Income Status of the NICU Parent

Volunteers (n=9) . . . . . . . . . . . . . . . . 132
Employment Status of Parent Volunteers (n=28). . 133
Family Composition of Mother Volunteers (n a 19) 134
Present Age Distribution of Children in NICU
Volunteers' Families (n = 18) . . . . . . . . . 134
Years Since Mother Volunteers Own NICU

Experience at Time of Entry into Support Program

(n - 19). . . . . . . . . . . . . . . . . . . . 136
Types and. Distribution. of Pregnancy' Related
Variables (n - 18). . . . . . . . . . . . . . . 137
Distribution of Characteristics of

Volunteers' NICU Infants (n = 19). . . . . . . . 138

Reported Reason for Infant's NICU

Hospitalization (n = 19). . . . . . . . . . . . 139

xiii

Table

11.

1'2 0

13.

14.

15.

16.

17.

18.

19.

Page

Description of Length of Infant's Stay in the NICU
(n - 19). . . . . . . . . . . . . . . . . . . . 14o
Distribution of Mother Volunteers' Reported Access
to Other NICU Parents during Their NICU Experience
and Type of Contact (n-19). . . . . . . . . . . 141
Distribution of Reported Infant Health Problems
Post NICU Discharge (n - 15). . . . . . . . . . 142
Distribution of Mother's Perceptions of
Difficulty of Infant Caretaking during the First
Three Months at Home (n - 18). . . . . . . . . . 143
Age of NICU Child at Time of Data Collection
(n - 18). . . . . . . . . . . . . . . . . . . . 144
Mother's Report of Current Health Problems in Their
NICU Involved Children at the Time of Data
Collection (n - 7). . . . . . . . . . . . . . . 145
Mothers Reporting Worry About the NICU Involved
Child Being ”All Right" (n - 18). . . . . . . . 146
Mothers Reporting Worry About Specific
Concerns in Their NICU-Involved Children(n=18).. 147
Distribution of Mothers' Perceptions of

Additional Family Stressors during Period of

”Program Participation (n - 18). . . . . . . . . 148

xiv

2‘0 .

21.

22.

23.

24.

25.

26.

27.

28.

Summary of Father ‘Volunteer’ Hours of Support
Program. Activities and Number of NICU Families
Served (n a 6). . . .'. . . . . . . . . . . . . 152
Summary Statistics for Mother Volunteers Level of
Involvement (n -18). . . . . . . . . . . . . . . 153
Volunteer Mothers' Level of Involvement (n - 18). 154
Effects Scale Reliability Statistics (n- 26). . 157
Percentage of All Parent Volunteers Reporting
Specific Effects of Program Resource and
Demands (n-26). . . . . . . . . . . . . . . . . .160
Percentage of Mother Volunteers Reporting
Specific Effects of Program Resource and
Demands (n=18). . . . . . . . . . . . . . . . . .161
Percentage of Father Volunteers Reporting
Specific Effects of Program Resource and
Demands (n-8). . . . . . . . . . . . . . . . . . .163
Categorization and Distribution of Volunteer Parent
Responses of Perceived Program Effects (n-13) . 165
Parent Volunteers Global Assessment of Resources

and Demands . . . . . . . . . . . . . . . . . . 168

Figure

5.

6.

LIST OF FIGURES

Page
The Family , Environment, and Family-
Environment Transactions . . . . . . . . . . . . 29
Family-Environment Transactions Over Time- . . . 30
Adjustment of the Family Unit to
Environmental Demands and Resources
Over Time . . . . . . . . . . . . . . . . . . . 31
Family Ecological Perspective of Volunteer
Support Parents . . . . . . . . . . . . . . . . 32
Roberts Nursing Model . . . . . . . . . . . . . 48

Roberts Nursing Model Integrated with the

Family Ecological Model . . . . . . . . . . . . 51
Summary of Specific Potential Effects of Volunteer
Participation . . . . . . . . . . . . . . . . . 112

Data Analysis Plan . . . . . . . . . . . . . . . 123

CHAPTER ONE
THE PROBLEM

Introduction

Professional staff in the Neonatal Intensive Care
Unit (NICU) have been concerned with the needs of parents of
the critically ill and/or premature infant and have sought
ways to help families cope with this experience that may
enhance positive parenting relationships (Eager, 1980:
Field, 1980: Brazelton, 1980). One strategy that health
care providers have found useful is the development of
supportive relationships between experienced NICU parents,
whose infants have been discharged from the unit, and those
parents who are currently involved in NICU care (Boukydis,
1980) . Although the particular forms of such supportive
interventions vary, the purpose is similar. The purpose is
to give the parent whose infant is in the NICU, access to
someone who has experiential knowledge of the NICU and
parenting a sick and/or preterm infant.

The relatively recent emergence of parent-to-parent
support programs for families whose infants are hospitalized

in the Neonatal Intensive Care Unit (NICU) is linked with

2

important phenomena that have occurred in the health care
delivery system. One such phenomena is the increasing
professional interest in health protective and health
promotive services that differs from traditional health care
models. Another is the acknowledgement of the limited
resources available for health care and the reality that
families may not get the support services they need because
of current financial constraints. Thus, a program that
utilizes lay volunteer care providers, such as the parent-
to-parent support program, may be a cost effective model of
care. Such a program attempts to maximize professional
resources and develop alternative human resources. Another
development that has influenced parent-to-parent support is
the growth of self-help consumer groups that focus on the
social support aspects of health care that may not be
adequately addressed by the current health care delivery
system (Barman, 1982) . The rapid growth of NICU parent
support programs in the United States has been
extraordinary, as evidenced by the formation of a national
organization, PARENT CARE, whose purpose is to network those
professionals and parents involved in NICU parent-to-parent
support.

Although there has” been continued nursing interest
and activity in the development of parent-to-parent support
intervention, there has been little research interest in the

mechanisms of parent-to-parent support or the child and

3

family outcomes of such an intervention. Additionally,
there is little information available about the
characteristics of those (parents who volunteer to provide
such service. It is not known how the parents previous NICU
experience or current parenting experience affects the
support relationship. Nor is it known how the support
relationship affects the support parent volunteer and the
volunteer's family. Nevertheless, nurses in both acute and
primary care settings, often facilitate the establishment of
such support relationships or coordinate programs that
attempt to foster the initiation of these relationships.

In order to begin to establish a knowledge base about
the clinical intervention of volunteer parent support, it
seems important to understand more about the parent
volunteer provider who has had a child in the NICU and them
subsequently returns to support another parent. Therefore,
a descriptive study is proposed in order to more fully
understand the characteristics of those persons who
volunteer as support parents, the volunteer's level of
program involvement and the volunteer's perceptions of the

effects of program participation.

Background of the Problem

The birth of a premature or critically ill infant who
requires neonatal intensive care is a stressful event for

the family unit. The notion that parents of premature and

4

sick infants experience feelings of grief at the loss of
their fantasized, healthy newborn is well supported in
classic and recent studies(Caplan,1960: Caplan and Mason,
1965; Benfield, 1976: Harper, 1976: and Paludetto,1981). It
appears that unrelated to the health care provider's
assessment of their infant's prognosis, parents fear for the
baby's survival and the potential for long term disabilities
(Benfield, 1976). While attempting to adjust to the reality
of the premature birth and the complex feelings that
accompany it, the family is immediately thrust into the
technological and sophisticated NICU environment. Once the
baby is admitted to the NICU, parents must quickly establish
relationships with. many’ new' health care ‘providers.
Additionally, the parent's understanding of what is
happening to their infant and what behavior is expected of
them as parents is confounded by the medical terminology and
language used in the unit (Bogdan, 1982).

The parent's reactions to their infant's health
condition and the environment of the NICU may also make it
difficult to take on the anticipated parenting role. The
baby's appearance is often alarming and violates parental
expectations of what their baby should look like. Parents
are hesitant to even touch their baby for fear they may
disrupt the life-saving technology attached to the baby.
The appearance of the baby itself violates parental

expectations. Where the healthy fullterm infant has the

5

sensory abilities to participate in interaction with the
parents, the 'preterm. or critically ill infant is often
unable to maintain a quiet, alert state in order to invite
the. parent's social interaction(Medoff-Cooper, 1982).
Results of studies indicate that. the. premature infant's
behavior is difficult for parents to interpret and lacks
positive reciprocal cues that encourages them to continue
interacting with their baby (Crnic, 1983: Crawford, 1982:
Gorski, 1981: Als, 1976: Field, 1976).

While parents adjust to the health problems of their
infant and the confusing environment of the NICU, parents
may also need to adapt their ‘usual patterns of family
functioning to accommodate a lengthy period of
hospitalization for the baby. Often families find .it
difficult to mobilize usual sources of support for an
extended period of time(Boukydis, 1982). Relatives,
neighbors, and co-workers usually lack experience and
knowledge about the NICU and premature babies. These
persons may also find it difficult to talk with parents
about the baby's condition and the possibility of death or
disability (Blackburn. and. Lowen, 1986). Since :neonatal
intensive care is regionalized in specific geographic
locations, usual support persons often have decreased
access to new parents who may spend their time in the
hospital setting. Although many NICU providers of care are

concerned about the parent's well being, their opportunities

6

to Offer support to families are often constrained by the
priority need to stabilize and treat the infant's life-
threatening problems. Additionally, the number of infants
currently in the NICU, the acuity level of the infant's
health problems, and staffing shortages aggravated by
hospital cost containment procedure, all work to prohibit
the availability of comprehensive parent support on a
consistent basis. Clinical practitioners have become
increasingly concerned that by the time of the infant's
discharge from the NICU, tired and anxious parents,
interacting with an infant of limited energy and capacities
for social interaction, are indeed predisposed to encounter
parenting difficulties.

Little is known about the experience of families
after their infants have been discharged from the NICU.
Those families whose children have major, identifiable
neurological or developmental sequelae are usually followed
in a hospital-based follow up clinic or linked to community
health agencies prior to discharge. However, the majority
of infants in the NICU are discharged with minor or
undetectable impairments, or with caretaking problems
related to prematurity. Although the health care system has
the potential to fulfill parents' needs for information on
child development and behavior, well-child visits rarely
devote much time to developmental topics (MacPhee, 1984).

This may be especially true for parents of preterm infants,

7
since new information about the preterm infant's behavior
and developmental interventions has not been successfully
disseminated from the acute care settings.

Studies of preterm infant's behavior, conducted
during the first year of life, indicate that these infants
are more difficult to jparentm They are less socially
responsive to the parents attempts to engage them in
interaction (Goldberg, 1983). Once awake, such infants can
easily get overstimulated and then have trouble making the
transition to a sleep state, thus making them more irritable
infants for parents to care for(Als, 1976; Brazelton, 1980).
Preterm infants are generally more difficult and time
consuming to feed because of their tendency to tire easily
and also because of physiological difficulties such as
gastric reflux. For parents, this means that a great deal
of energy is needed to attempt to soothe and adequately
nourish the baby and often their efforts go unrewarded by
any positive cues from the baby. In addition, many preterm
infants have a decreased resistance to infectious diseases
and experience reoccurring respiratory problems during the
first year of life. Parents. must therefore avoid the
infant's exposure to others, thereby limiting the parent's
opportunities for social contact.

Following the first year of life, few studies have
been conducted with NICU families. Those studies that have

been reported indicate conflicting results about the

8

positive or negative sequelae of the NICU experience on
family and parenting outcomes (Hunter and Kilstrom, 1978:
Boyle, 1977: White and Dawson, 1981). There is also little
known about the longitudinal nature of the processes of
parental adjustment to the NICU experience and the effect of
this adjustment. or lack of it, to current parenting
behaviors. Studies that include a description of the
process of grief, as an indicator of parental adjustment,
are limited to the first few months post infant discharge
(Benfield, 1976). It is possible that parents who volunteer
or are chosen for support roles are currently dealing with
an ongoing process of adjustment to their own NICU
experience or with new issues that may have emerged related
‘ to their child's current developmental stage or health
status.

There is no description in the literature of what
kinds of former NICU parents volunteer to participate or are
invited to serve as volunteers in support programs. Most
programs indicate that parents who serve as volunteers have
been carefully screened and chosen because they have
demonstrated their own abilities to cope with and resolve
their own NICU experience as judged by the professional
staff (Garrand, 1978) . No specific criteria are reported
that are used to select such families.

Little is known about whether support parents

represent families who have additional family resources and

9

often volunteer for helping roles, or whether the role is
attractive to families who are having difficulties and the
support program is a way of accessing needed family
resources. Other family characteristics that may influence
“the decision to adopt a support role are age of the
children, health and developmental concerns of the NICU
child, and parenting difficulties.

Given the stressors that accompany the NICU event, it
is difficult to understand the parents' motivation for re-
establishing a relationship with the NICU staff, and re-
entering the NICU. Volunteer support parents are willing to
make themselves vulnerable to their own painful memories,
and also verbalize and share these memories with a new
family. Such support activities use physical and
psychological energy that could be used in other ways that
may contribute to individual and family goals, yet the
volunteer parent elects to participate in such a role.

Parents' motivation for choosing to volunteer for the
support role are no doubt grounded in a complex mixture of
altruistic and self serving needs. Literature from other
fields of study that describe volunteer helpers who have had
similar health related experiences in the past, indicate
that there may be benefits for those who function in such a
role (Trainor, 1984 : Abramson,1976). Reismann coined the
phrase "helper therapy" to describe the benefits that may

occur to those in helping roles (1965). Improved self

10

image, becoming more committed to a position through
advocating it and the status of the new role are believed to
be some of the ‘mechanisms 'whereby' the Ihelper' benefits.
Although there are no reported negative effects of
participation in the support role, the investigator's
clinical experience would caution that these effects may
exist for some volunteers and their families. Theorists
studying helping relationships have also raised concerns
about the potential negative effects to the helper and have
enCouraged the investigation of such effects(Pearlin, 1985:
Wortman, 1982).

In summary, although NICU volunteer parents are being
utilized to deliver parenting support to new NICU families,
little information is known as to: .

1) who volunteer support parents are, in terms of

their demographic characteristics, their own NICU
experience, and the current status of the family
system.

2) how parents participate in the support program

and enactment of the support role.

3) what the parent's perceptions are of effects of

participating in a support role.

Current information about families with previously
NICU involved infants does not reassure nurses involved with
:support programming efforts that the volunteer families may
110t be vulnerable to family and parenting difficulties

11

themselves. Nurses do not wish to make available parent-to-
parent support to new families if such relationships may
jeopardize the health and well being of the volunteer
families. However, if there are therapeutic benefits to
parents who return to the NICU in the support role, then an
awareness .of these potential benefits could help nurses
maximize the intervention for all families. Therefore,
careful study is needed. to explore ‘what kinds of ‘NICU
parents volunteer for the support role, how volunteer
parents perceive their participation in the support role and
the effects of their participation.

Purpose of the Study

The general purpose of this study is to describe a
group of NICU volunteer support parents, their level of
program involvement, and their perceptions of the effects of
their participation in the program. An exploratory design
will be ‘used. to simply identify' and. describe important
variables for further study. Although multiple variables
will be included in the study, the purpose will be to
describe the status of each and not to indicate

relationships.

Research Questions
The specific research questions to be addressed in this

study will be:

12

1. What are the background characteristics of
parents whose children have been hospitalized in
the NICU in the past and subsequently volunteer
to support parents whose children are currently
in the NICU?

2. What is the NICU support parent's level of
involvement in parent-to-parent support program
activities.

3. What. do NICU .support parents identify' as ‘the
perceived effects of their participation as a

volunteer in the support program?

Definitions

The following terms are used through out this study
and therefore defined:

Background characteristics. For the purposes of this
study, background characteristics will include (1)
demographic, (2) family-related, and (3) NICU historical
characteristics. Demographic characteristics are those
attributes that describe the volunteer parent in a
perspective of the broader population. Demographic
characteristics usually include such variables as age, sex,
race, marital status, employment, occupation, education,
income and housing(Babbie, 1973). For the purposes of this
study, selected family characteristics that relate to the

family unit's current resources and demands will also be

13
described. Such variables as size of the family unit, age
of family members, health of family members, and current
environmental stressors that affect the family’ will be
considered.
Since parents who volunteer for the support role are
a small proportion of the total population of NICU families,
a description of NICU characteristics may serve to further
delineate those parents who volunteer from the specific
population of those families with NICU-involved children.
NICU historical characteristics may include mother's
pregnancy history, infant characteristics at birth (sex,
weight, reason for admission to NICU, infant transport,
length of stay in the NICU, life threatening status),
parental contact with support parents, and infant
characteristics post discharge (perceptions of infant
caretaking at home, health problems).
ve f Involveme t n Su ort P o m c v t es.
In order to be able to interpret the volunteers responses to
the questions that relate to effects of participation, it
will be necessary to determine volunteer's level of
involvement in support program activities. For the purposes
of this study, support program activities will include (a)
group preparation and monthly support and supervision group
sessions and (b) those activities that involve the direct
support ’ of NICU families. preparation program and

professional support component, which may add to the

l4

volunteer's own personal resources. Level of involvement is
an important variable in this study, because the sample
parents are participating in a demonstration program that
includes a generous amount of professional input for the
volunteer parents, which may add to the parent's resources.
An estimate of parent's time in activities can also be used
as an indication of the resources that the parents spend on
program activities.

Level of involvement will be defined as an estimate
of the amount of 'time the 'volunteer spends in. program
activities. Program records 'will be ‘used in. order’ to
document the parent's program activities. The parent will
review and validate or correct the program records for time
spent in program activities.

NICU support papent. NICU support parents are
usually defined in the Iliterature as parents who have
successfully coped with the experience of having an infant
in the neonatal intensive care unit (Shosenburg,1980:
Garrand,1978). Such parents are often referred to as
"veteran" parents, those who have successfully weathered the
specific crisis and are available to help those new to the
situation(Shosenburg, 1980). There are no available
criteria in the literature for identifying parent
volunteers, other than the staff's perception that the
parents ‘were "good”' parents and. handled their' own. NICU

experience in a positive manner(Garrand, 1979). Some

15

programs wait until parents indicate an interest in helping
other parents, and then invite them to participate
(Eager,1980) . Many volunteer support parents receive some
informal preparation for the support role and are
occasionally offered continuing support through monthly
group meetings with other volunteer parents. For the
purposes of this study, an NICU volunteer support parent is
defined as a parent who has experienced the birth of a
critically ill infant requiring NICU care in the past,
responds to an invitation from the NICU to help parents
whose infants are currently in the NICU, and completes any
preparation requirements necessary for the role.

Perceivgd effects of program participation. When
former NICU parents volunteer to invest resources by
participating in a support program, is likely, because of
the nature of the helping relationship, that there will be
more demands placed on the individual and indirectly the
family. It has been suggested in the literature, that there
may be the potential for. additional resources or benefits
that occur to those who adopt the helper role. Human
resources and demands can be identified as time, energy and
human capacities such as affective, cognitive and behavioral
capacities (Deacon and Firebaugh, 1982). Perception can be
viewed as a person's unique way of viewing the world. It is
the process by which information from the environment is

organized, interpreted, and transformed to give meaning to

16
one's experience (King, 1981). Therefore, perceived effects
of participation will be conceptualized as an increase in
resources and/or demands for the parent volunteer that the
parent attributes to participation in the support program.
Assumptions
The following assumptions are made concerning this
study:

1. Whether the family is able to effectively performs its
functions, including its child nurturing role, depends
on the resources the family brings to the situation
and availability of external resources that may
augment the family's resource base.

2. The family's ability to maintain its functioning is
challenged by the birth of an infant who is critically
ill and requires NICU care.

3. NICU parent volunteers are part of family systems who
are themselves in the process of adjusting to their
own NICU experience and are currently coping with
issues that emerge from their child's current health
and developmental status.

4. Volunteer support parents will be able to identify
accurately the consequences of their participation in
the volunteer support program.

5. The possible consequences of volunteer parents
participation in the volunteer support program can be

identified and elicited by a mailed questionnaire.

17
The involvement of a parent in the NICU support parent
role has both demands and resources for the individual

in the context of the family system.

t o s e St

The following statements describe the limitations of

this study:

1.

This study is limited to the convenience sample of
volunteer parents and other family members who were
involved in the initial Perinatal Positive
Parenting(PPP) NICU demonstration program, Butterworth
Hospital, Grand Rapids, MI.

Because the PPP/NICU program is a demonstration
program that includes an intensive period of volunteer
parent preparation for the support role, utilizes a
half time nurse coordinator, volunteer parents may
have increased access to the program nurse and other
volunteer parents and therefore may not be
representative of all NICU volunteer parents.

Parents may answer survey questionnaires in such a
manner to present a favorable image to the researcher
and may differ from reality. This may be especially
true for families with high risk who often are
carefully assessed for parenting dysfunctions.

Prior relationships with the researcher as part of the

preparation program may affect the parent's response

18
on the questionnaire.
5. The survey will only measure one point in time and the
consequences of participation will vary over time.
6. The survey will only describe the perception of one or
at the most two family members and cannot be construed

as adequately describing the family as a whole.

Significance of the Study

In 1980, the American Nurses Association prepared a
Social Policy statement that indicates that nursing as a
profession has leadership responsibilities for the
continuing development of health resources, with an
increasing focus on individual, families and other groups as
basic self help resources. The policy statement also
includes the expectation that the Clinical Nurse Specialist
should engage in interprofessional collaboration and
consultation in planning and evaluating health programs for
groups at risk (1980) . The development and delivery of
social support clinical interventions for high risk groups,
such as NICU parent-to-parent support, is a relatively
recent phenomena in health care. Nursing, in collaboration
with other practitioners, has taken a leadership role in the
initial development of parent-to-parent support resources
for families with infant's hospitalized in an NICU(Eager,
1980: Shosenburg, 1980: Garrand, 1978). However, the role of

nursing in such programming efforts has not been well

19
delineated or described in the literature.

Although the role functions of nurses vary in parent
support programs, the fact remains that the nurse has
contact with two groups of parents who could be considered
at risk for parenting alterations and other family
dysfunctions. The American Nurses Association,in its Social
Policy Statement, has charged the clinical nurse specialist
in advanced practice to specifically identify populations at
risk for health problems(1980). Thus, it is appropriate
for the Clinical Nurse Specialist to assess the
subpopulation of NICU volunteer support parents as a group
that may be at risk for continuing parenting and health
related problems as well as new stressors that may occur as
the result of the parent's participation in a support
program.

This study will provide useful information to the clinical
nurse specialist who may function in a coordinating or
consultative capacity to parent support groups in an acute
care setting. It will also be of use to those nurses in
advanced practice roles, delivering primary care services to
NICU families and children who may be served by a support
program, or who may volunteer to participate in such a

program.

CHAPTER II
CONCEPTUAL FRAMEWORK
Introduction

For the purposes of this descriptive study, a
conceptual background is presented as a perspective that
places the research problem in the larger scheme of things.
This is different from the more deliberate analysis and
synthesis of concepts that characterize studies at higher
levels of inquiry(Diers, 1980).

There are many conceptual schemes that could be used to-
approach the study of the research concerns, those parents
of formerly NICU-involved children who chose to act in the
role of a volunteer support parent, their involvement in the
program, and their perceptions of effects of participation.
However, the researcher believes that the individual
volunteer parent's participation and the effects of
participation are embedded in the parent's own NICU
experience and in the broader context of the parent's
current family situation. Therefore, a conceptual
framework that can depict the volunteer parent in the

context of the volunteer's family, the support program,and

20

21
the interactions between them, would be useful in guiding
the selection of the study variables. The investigator
suggests that a family ecological systems framework could be
used in order to unify the study concerns and provide a
family focused approach that is well suited to exploratory
investigations.

In this chapter, the central components of the family
ecological systems framework will be described. The
research questions will then be discussed using this
framework. In order to be able to discuss the nursing
implications of the research findings, a nursing conceptual
model will also be presented. The nursing role in the
delivery of a parent support intervention and in particular
the nurse's relationship as a direct caregiver with
volunteer parents has not been described in the literature.
Robert's interactional model for the nurse-client
relationship, although not a well developed theoretical
model, is useful in considering the level of client needs
assessment and appropriate nursing responses for nurses
involved. with, parent support interventions (1983). The
Roberts model is also appropriate for consideration of the
nurses role in primary health' care settings, serving
families whose infants are currently in the NICU and those
who function in the capacity of the support volunteer
parent. Additionally, Robert's model fits well with the

family ecological perspective and. will enhance the

22

presentation of the nursing implications.

Family Ecological Framework

An ecological perspective is a way of viewing persons
and their environments as systems in interaction, with the
focus on the processes by which each influences and affects
the other(Paolucci, Hall and Axinn, 1976). More recently,
ecological theorist have described these processes as
transactions, or the mutual, simultaneous influences that
occurs between persons and their environments as opposed to
interactions that are causal interconnections between two or
more independent and self-defining objects(Fisher, 1982).

A family ecological framework, grounded in a family
systems approach, identifies the family unit, composed of
individual family members, as a corporate entity, that is in
continuous transaction with its environments. Ecological
theory extends family systems theory by drawing attention
to the family's transactions with its biological, physical
and social environments(Andrews, Bubolz, and Paolucci,
1980). Because both the family and the environment change
over time, the linkages that connect them must be
continuously monitored , so that the effects of one on the
other can be in some measure controlled (Paolucci, Hall and
Axinn, 1976). The major components of the family ecological
framework are: l) the organisms or family members as a unit;

2) the environment and 3) the transactional processes

23
between family members and the environment(Paolucci, Hall
and Axinn, 1976). A brief discussion of each component will
follow.
The Family Members as the Family Unit

Family systems theory views the family in a unitary
manner and considers individual family members ‘to be
interacting parts of the family unit (Whall, 1982). The
assumption of the unitary conceptualization is that the
whole family unit affects the family members and each family
member affects the unit. If there is a problem with an
individual member, it is reflective of a problem with the
whole. Additionally, one family member's coping response to
an environmental stressor or demand, may create stress for
other family members(Huston, 1982) . From a family
ecological perspective, the family unit can be defined as a
set of mmtually interdependent yet individual family
members : intimate, transacting, and interrelated persons,
who share some common goals, resources, and a commitment to
one another over time,(Paolucci, Hall and Axinn, 1977).

The family unit exists to accomplish a variety of
functions, that either society or the specific family unit
deems essential to the survival and enhancement of the
family' group. 'These functions are enabled. by specific
family processes and center around the caring and nurturing
of members, and working inside and outside the home in order

to acquire and transform the resources necessary to support

24

the family needs(Paolucci, Hall and Axinn,l977). .Family
functions and processes that are frequently identified in
the literature include: human development and nurturance,
household production , consumption and maintenance ;
management and decis ion making ; communication and
interpersonal relations: stress and conflict management:
personal maintenance; and boundary maintenance(Bubolz and
Whiren, 1984: Roberts, 1983).

The family unit contains resources, defined as the
means for meeting family and environmental demands. These
resources can be classified as either human or non-human
resources. Human resources are all the means that are
endowed in family members that can be used to meet demands.
Human resources may include the cognitive, affective, and
psychomotor/behavioral elements of human capacity, as well
as health, energy and time (Deacon and Firebaugh, 1982) .
Non-human resources are those which are external to family
members but which are possessed, utilized or controlled by
the family (Gross, Crandall and Knoll, 1980). Money is
often considered a major non-human resource because the
family is able to use it to purchase goods or services.
Both human and nonhuman resources may become available from
productive activities internal to the family system or
through interaction with other systems(Deacon and Firebaugh,

1932).

25

Family resources are different from individual
resources in that they are combinations of individual
characteristics or the operationalization of the
interdependence among’ family' members (Walker, 1985).
Integration/cohesion and adaptability are the most
frequently identified family resources in the current
literature (Walker, 1985) . Family process resources are
resources that are present at the social-psychological level
of interpersonal processes and relationships, such as
cohesion and adaptability (Amato and Ochiltree, 1986).
Family structure resources are social structural in nature.
Examples of family structure resources are identified as:
family income, parent's occupational status, parent's
education, household crowding, housing quality, neighborhood
quality, number of parents, and parent's health. The total
resources of the family comprise a system of their own, with
a change in one bringing change throughout the family system
(Gross, Crandall and Knoll, 1980). The family is
distinguished as a unit from other aspects of the
environment by a semipermeable 'flexible boundary that
filters the kind and rate of flow of inputs through the
family system. The family is considered a semi-open system,
at times open to transactions and at times closed to input
from the environment. Each family unit differs in the
degree of openness. Families need to maintain a measure of

both openness and closedness to be both flexible and stable

26
at different points in time(Paolucci, Hall and Axinn, 1977).
The family system receives information within the family
unit and from outside the system in response to its
performance. This system process called feedback stimulates
the family to adjust and change its behavior or to maintain

its current level of functioning(Melson, 1980).

The Enviponmgn; of the Family

Environment can be defined as all objects and
relations among objects, outside or external to, but
affecting a given family system(Melson, 1980). The
environments that impinge on the family system can be
classified as biophysical, psychosocial/behavioral and
technological/constructed environments (Paolucci, Hall and
Axinn, 1976: Bubolz, Eicher and Sontag, 1979). Although
these environments are identified as if they are separate
components ,they are in fact interrelated and overlap with
each other.

For’ purposes of this study, the social or' human
behavioral environment of the volunteer family is of
importance. The social environment is the environment of
human beings and their biophysical, psychosocial and social
behaviors that constitute environments for each other(Bubolz
and Whiren, 1984). The human behavioral environment
includes people's presence, their bodily movements and

physical posture and also their thoughts, values, attitudes,

27
sentiment and relationships (Bubolz, Eicher and Sontag,
1979). The family unit itself is considered to be an aspect
of the social environment for individual family members.

The environment is a source of family demands and
resources which can enhance or limit the potential for the
growth and development of family members (Paolucci, Hall and
Axinn, 1976) . Demands can be defined as stimulants for
responses from the family system. Demands are made upon the
family resource base by expectations and events originating
in the environment (Deacon and Firebaugh, 1976).
Environmental resources are the available means or assets in
the environment for reaching family goals and meeting
demands. The social environment can provide new ideas,
values and information which may add to the family resource
base. ‘Idkewise, the social environment can also be source
of demands, that challenge the family resources (Paolucci,

Hall and Axinn, 1976).

Transnctions between Family and Enviponment

The transaction that occurs between the family unit
and the environment is a critical component of a family
ecological model. Transactions between family and
environment can be defined as the mutual, simultaneous
influence that occurs between the individual family member
and the family system and the family system and its

environment(Melson,l980). This occurs through the

28
transformation of energy, in the form of information,
material and nutrient flows(Paolucci, Hall and Axinn, 1977).

Energy transformation is an important process whereby
the family uses energy to obtain resources from the outside,
to process resources in ways that meet its goals, and then
releases outputs back into the environment (Bubolz and
Whiren, 1984). This process has been described as an input,
throughput, output process by Deacon and Firebaugh(1982) .
Matter, energy and information, often classified as
resources or demands, are considered the stimulus and enter
the family system as input. Demands can be described as
goals or events that require action and may originate inside
or outside the family system. Resources are a means for
meeting the demands of the family system. Both resources
and demands are considered input. Throughput is the
transformation processes that changes inputs into forms that
meet the family needs or goals. Output is the used
resources or met/unmet demands that enter the environment
and yet is reintroduced. to the family system. as input
through the processes of feedback.

The family unit, the environment and the
transformation process in the family system is depicted in
Figure 1 (Deacon and Firebaugh, 1982).

The family organizes itself in order to facilitate
the processing of inputs from the environments, and

coordinates the activities of family members in order to

29
achieve family goals and meet family needs. This family
organization also creates roles and rules for acting and
organizes itself through decision-making and managing

process (Paolucci, Hall and Axinn, 1976).

 

 

 

 

a. m...

 

 

 

FIGURE 1: THE FAMLY. ENVIRONIENT mo Fmv-Euwmr
mmmomsomouomasmofimFu.
FAMtLY RESOURCE mm. BOSTON mum-u BACON me.
1931)

 

 

 

This description of the family unit side of the
transaction may lead one to perceive Of this transaction in
a more linear, interactive relationship. However, this
transaction is a dynamic process Of simultaneous, mutual
influence between the family and the environment (see figure
2).

Stress can arise from a transaction between the family
and environment if the family perceives the environment's
input. as damaging, threatening or challenging (Scott,1980) .
Stress can be viewed as a situation where the family

perceives that the environmental demands exceed the

 

30
ayailable family resources (Scott, 1980) . Stress within

certain limits can serve as a motivating force to create

 

 

If! mev may
0 $ 04» a
W W smear m
TIME
t1 ‘2 t3 ‘4
FIGURE 2 : FAMILY ENVIRMENT Tm OVER TIME

 

 

change and enhance family functioning. However, if demands
increase and resources are not available or mobilized, the
family may not be able to sustain adequate family
functioning and allow for the full development of all family
members while maintaining a functional unit (Whall, 1980) .
Thus, it is the "fit", defined as the discrepancy between
the demands and the resources, that ultimately determines
the family systems abilities to grow and change, maintain,

or diminish the family as a functional unit (Melson, 1980).

31
WWI}:

In summary, the. family ecological framework consists Of
three central components. Family members or organisms are
cOnsidered as a unity or whole, with characteristics
different than the sum of the individual characteristics of
family members. The family is in continuous transaction
with its environment, which supplies resources and also
makes demands on the family unit. The family transforms
this input to meet its needs and then returns output into
the environment, which becomes input to the environment.
The transactions between the family and environment are
mediated by the family organization. The family

organization attempts to adjust the discrepancy between

a»
.

demands and resources in order to maintain or enhance the
functioning Of the family unit. These relationships are
depicted in Figure 3.

 

.““

FMY \‘
WT :
.'

Hi
:3 w

    

   
 

...p.o.\" ....o. . .0...
0.. \ 0'. 0'.
‘ e
' e
C

 

FBUREG :ANMOFFMLYWTTOWAWMDM
OVER“

 

 

 

32

W2
EQQlQ91EA1_EIAEQEQIK_IQ_§EQ_§§B§!

The family ecological framework can be used to guide
the development Of the three research concerns, that is, the
volunteer parent's background characteristics, the parent's
level of involvement, and the parent's perception of effects
of participation. An integration of the research concerns

into the family ecological model is depicted in Figure 4.

 

 

 

TIME
I l I
f . r , I e
I I I I
1 2 3 4
mm mm PARTICIPATIQI IN DATA
mm mm m m cam

FIGURE 4 : FAMILY ECOLOGICAL PERSPECTIVE OF VOLUNTEER SUPPORT PARENTS.

 

 

 

33

Background characteristics Of parents will be
broadly assessed including demographic, family-related, and
NICU characteristics. The .NICU support program will be
considered as an important component of the social
environment. The support program can be further described
as having three components: 1) the nurse coordinator: 2)
other volunteer parents(peers): and 3) current NICU families
that are supported. For the purposes of this project,
indicators or outcomes Of the transaction between the
volunteer parent, as a family member, and the support
program will be the parent's level Of involvement in the
program and the perceived effects Of participation in the

program.

Background Chgpacteristics

Background characteristics are usually included in
descriptive studies because they help differentiate those
persons in the study from others in the general population.
In addition to demographic characteristics, the family
ecological approach would focus the researcher's attention
on those characteristics that indicate the environmental
demands and resources Of the family system, and how the
family transacts with aspects Of the family's environment.

Background characteristics at three specific time
periods may be Of importance in order to further distinguish

support parents from other NICU families. Characteristics

34

Of the period Of time surrounding the birth and
hospitalization Of the volunteer's own child and the
family's resources and demands may be useful. Descriptions
' Of Othe period after’ discharge from. the NICU, when the
volunteer may have experienced the need for veteran parent
support, may also distinguish volunteer parents. The
present time period, where the volunteer parent has chosen
to invest some Of the family's resources Of time and energy,
may be helpful to describe.

For the purposes Of this study, background
characteristics of the volunteer parents may include both
demographic characteristics, family related characteristics
and NICU historical characteristics. The description Of
demographic characteristics will serve to place the
volunteer parents in terms of the broader population and
also can be used to identify analytic and global family
resource and demand characteristics of this subpopulation Of
NICU families. Families differ in resources by virtue Of
their position in the social structure (Amato and Ochiltree,
1986). Therefore, the characteristics Of age, sex, marital
status, race, education, employment, occupation, and living
situation will be assessed and can be considered as evidence
Of individual and family resources.

Family related characteristics are of importance in
this study’ because families of NICU children are Often

considered at risk for parenting alterations because Of the

35

increased demands for caretaking on the family system.
Early work suggested that the bonds between mothers and
critically 111 infants may be disrupted and inappropriate
parenting behaviors, such as overprotectiveness to the
extreme Of child abuse and neglect, emerge(Elmer and Gregg,
1964 : Lozoff, 1977). Whether such risk exists has been
controversial because of methodological concerns about the
research(Leventhal, 1981). But the risk for altered parent-
child interactions because Of parental anxiety, continued
illness after discharge, decreased responsivity to parental
caretaking, and increased caretaking demands are well
accepted notions (Preventing Low Birth Weight, Institute Of
Medicine, 1985).

The number Of NICU family units that continue tO cope-
with parenting‘ challenges because Of health and
developmental sequelae in their NICU involved child has not
been precisely measured. Physical impairments and
developmental impairments that lend themselves to current
diagnostic techniques are estimated to be about 20-30% Of
the NICU population (Escalona, 1982). This figure varies
because Of different treatment protocols and accessability
to early treatment that is unique to each NICU setting.
However, there is growing concern about the number Of
behavioral problems in preschool children and school
difficulties experienced by NICU children. Thus, it seems

likely that volunteer NICU parents may be currently coping

36

with the demands Of caring for a child who is health
impaired and experiencing stressors that are commonly
associated with such families. These stressors include:
strained family relationship(marital instability, parenting
stressors), altered family activities and goals, increased
tasks and time commitment related to caretaking, social
isolation, medical concerns, school difficulties, and
parental grief and anxiety (McCubbin and Figley, 1984).
Other family stressors, such as job loss, illness or death
Of significant others would also be indicators Of a family
system's current demands.

Since parents who volunteer for the support role are
a small portion Of the total population of NICU families, it
would seem useful to further identify characteristics or
patterns of characteristics that may serve to delineate
volunteer parents. There is no reported data on specific
characteristics Of volunteer parents or their families
currently available in the literature. There is, however
limited information on the kinds Of women who are more
likely to deliver low birthweight infants and require
neonatal intensive care. Analysis of those factors that
contribute to risk status indicate that young mothers are
overrepresented in the NICU population and are more likely
to be black, low socioeconomic status, less educated than
Older mothers, report late for prenatal care and are

unmarried. These risk factors and others, associated with

37

low birthweight, were identified in a national study at the
Institute Of Medicine convened by the Surgeon General in
1985 (see Appendix A). It is also likely some mothers Of
low. birthweight infants may be Older, with a history Of
pregnancy and non-pregnancy related medical complications
that have interfered with the mother's abilities to deliver
an infant that can survive. At this time, risks factors for
low birthweight are widely distributed throughout the
population and a substantial number will occur to women
outside of those groups defined as risk populations.

Using the ecological model, the NICU characteristics
that may distinguish the NICU parents who volunteer to be
support parents could be those characteristics that describe
the parents. demands and resources at the time of the
pregnancy, the NICU’ experience and. the. period. of early
caretaking at home. It would be helpful to know if parents
who volunteer are those parents who had difficult, demanding
NICU and parenting experiences or are parents who had a
relatively easier experiences. Characteristics related to
demands and resources may be identified as pregnancy
difficulties, infant characteristics, the infant's health
characteristics on admission, and at discharge, infant
caretaking post neonatal discharge. Assessment of the
volunteers own access to and use Of parent support may

further delineate those parents who come back to volunteer.

38

Level Of Involvement

Using the ecological model, level Of involvement can
be conceptualized as an indicator Of either family resources
or family demands. The parent's level Of involvement in the
program preparation sessions and in the monthly group
supervision and support meetings will be primarily viewed as
resources. The purpose Of these sessions are to increase
the volunteer's knowledge base and actual skill development
around the issues Of parenting, family relationships,
communication and interpersonal skills and self care. It
might be anticipated that changes in these particular areas
in the volunteer may spill over into the volunteer's own
family relationship. For the parent who already has such
resources available, these sessions may be interpreted as
demands.

Parent's level of involvement is really an attempt to
crudely measure the time and energy parents put into the
program. It will supply information that gives a range of
involvement for a group Of volunteer parents. It may well
be of most benefit in later studies that compare this
variable with effects Of participation and background

characteristics.

Effects of Participation

Using the conceptualization Of transaction between

the volunteer parent, in the context Of the family, and the

39

program as an aspect Of the social environment, perceived
effects are conceptualized as of as outcomes of such
transactions. These outcomes could be viewed as an increase
in .demands or an increase or decrease in resources.
Perceived effects Of program participation will be assessed
from individual family members as analytic indicators Of the
family, that is individual perceptions related to self and
in relationship to other family members. This study will
describe a selected number Of both potential resources and
demands and assess whether volunteer parents perceive these
aspects as influenced by program participation. An
additional interest would be the parent's overall assessment
Of whether there is a large or small discrepancy between the
resources and demands Of participating in the support
program.

Potential effects of participation in a support
parent role will be identified as resources and demands that
are either available or are placed on volunteer families by
virtue of their participation. The conceptual notions of
self help and helper therapy, which describe effects for
those in helping relationships will be the literature base
for defining potential effects Of participation.

A self help group can be defined as a human service
oriented voluntary association made up of persons who share
a common problem and. who 'work ‘together' to resolve the

problem through mutual-aid( Borkman,l976) . NICU support

40

volunteers do not quite fit into the category Of a self-help
group because they have chosen to train for and adopt a
support role for new parents versus joining a group whose
purpose is to Offer mutual aid to participants. However,
they have chosen the particular demonstration program with
the understanding that they will participate in
approximately twenty four hours of group sessions around the
issues Of the NICU experience with parent volunteers like
themselves. They also continue to meet once a month with
each other tO talk about the support role and other NICU
issues. The broadly stated (purpose Of these group meetings
is to increase the volunteer parents understanding Of their
own experience and also to understand the great variety Of
ways different families cope with the NICU. Although the
support parents do not fit all Of the characteristics
associated with self help groups, they do meet as a group
and share their experiences and may provide emotional
support to each other.

Of interest in this project would be the cognitive,
and emotional processes that oftentimes occur in self-help
groups that may influence the consequences of the
volunteer's participation. Levy identified the following
cognitive processes which provide members with an
understanding Of their problems and ideas for dealing with

them; providing information and advice that helps members to

make changes,or see themselves as normal: expanding the

 

41

members perceptions Of their situations and ways of coping;
heightening awareness that all members share a common
problem, reducing a sense Of isolation: and creating another
structure whereby members can build a new identity and
increase self esteem (1979). Lieberman, in a study Of
change processes in a group Of bereaved parents identified
the following benefits: support, understanding, acceptance
of the loss, assurance by others that their behavior is
normal, an Opportunity tO express their grief, a sense of
belonging and involvement, and the experience that their
problems were not unique (1979).

The concept of helper therapy appears to fit even
closer to the role of the NICU volunteer support parent.
Reismann coined the phrase "helper therapy" in order to-
describe what he felt were the benefits Of helping other
people(1965). Although much of the evidence for the helper
principle was Observational and uncontrolled at the time
Reisman described the notion, he speculated as to the
possible benefits for the helper. These benefits include
improved self image that may result from doing something
worthwhile and helping others in need (Brager,1965) ,
becoming committed to a position through advocating it
(King-Janis, 1956) , and the status and importance of the
role.

Skovholt( 1974) attempted to further work on the

conceptualization Of helper therapy. He described a social

 

42
competence model that supports the notion of the ego
concepts of effectance and competence. The feeling of
effectance is related to the positive feelings that occur
when helping appears to be making a difference in another
life. Competence comes from feeling able to deal
confidently with the environment. Skovoholt identifies the
benefits received from helping as: the increased
interpersonal competence by impacting on another's life: the
sense Of equality in receiving and giving to others:
receiving valuable personalized learning and receiving
social approval for helping others. Although Skovholt's
work is a beginning step in the conceptualization of helper
therapy, there has been little recent work to further
clarify the concept. Most Of the early studies that
supported the conceptualization of helper therapy were in
the fields of education and psychology (Gartner, Kohler, and
Riessman 1971). Since that time a few health related
studies have continued to provide evidence for this notion.
A study Of volunteer support widows indicated an increase in
self-worth and independence (Silverman, 1979) . In a study
Of volunteer ostomy support persons, it was found that
ostomy visitors showed a significantly greater level Of
acceptance Of their own ostomy than those persons who did
not visit (Trainor, 1982). An ecological model would
support the notion that if volunteer helpers can benefit

from participation as a helper in a relationship, that

43

likewise participation may also create demands or cause
increased stress for' the ‘volunteeru Few' theorist have
attempted to describe models that include the negative
aspects of support relationships for the giver of support.
Although the notion of health benefits for those receiving
social support is well accepted, little attention has been
given to the consequences Of providing support to others.
Pearlin (1985), a social support theorist, questions what
happens when the best efforts to provide effective support
fail? DO providers Of support become burned out and
withdraw from such a relationship because it reminds them Of
their own inadequacy? He cautions that it may be that
whatever benefits the recipient enjoys are at the expense Of
the donor.

Thus, for the purposes Of this study, the volunteer
support parent will be conceptualized as having the
potential to receive both positive and negative effects Of
volunteer participation. It is suggested that these effects
are outcomes of the support person, family and environmental
transactions. The consequences of participation are not
limited to the volunteer parents alone. If there are
changes that occur in the volunteer parent related tO their
participation in the program, it is proposed that these
changes may also affect other family members in a positive
and/or negative manner. In order to assess a broad range Of

effects, potential effects will be categorized as to whether

h—

 

44

they are cognitive, affective, or behavioral effects and
also whether they are effects that reflect resources or
demands. V

For the purposes of this study, it seems necessary to
clarify the conceptual notion Of individual characteristics
or properties and family characteristics or properties. The
differentiation of the two is a current dilemma that plagues
the field of family research and has not as yet been
satisfactorily resolved. Lazarsfeld and Menzel(l969) and
Straus(1964) have proposed that a unit comprised Of
individuals can be described by its analytic, structural,
and global properties. Using this classification system,
Gilliss (1983) suggest that analytic indicators measure
Characteristics Of the individual family members: structural
indiCators provide information about the relatedness Of
family members and are process oriented: and global
indicators represent a category of static measures,
collective products that describe the unit,apart from
process. It is important to note the difference between the
labels in this classification scheme and the scheme of Amoto
and Ochiltree (1986) used to distinguish between family and
individual resources cited previously. Social structural
family resource characteristics could be relabeled global
family indicators to be consistent with the classification

system.

45

Analytic indicators Of individual family members can
be further categorized as l)absolute, which come from the
individual and serve tO describe him; 2)relational, which
come from information on the relationships between family
members; 3) comparative, which compares one family member to
another and 4) contextual, which describe a member
according to the qualities Of the unit (Gilliss, 1983). For
the purposes of this study, analytic and global indicators
Of the family unit will be studied. Structural indicators
that describe family relatedness will not be included. The
individual volunteer parent will be studied in the context
Of the family ecosystem. The individual's perception of
themselves, their perceptions of other family members or of
themselves in relationship to other family members in the

ecosystem will be sought.

Roberts Nupsing Model

For the purposes of this study, nursing is considered
one of three key elements of the NICU support program. It
is the nurse who is Often identified as a :manager or
coordinator Of such programs, and who usually has direct
contact with the NICU families and the volunteer support
parents. Although the nursing role as currently described
in most support programs is not a well developed role at
this time, study findings will be used to further explore

and develop role functions. The role of the clinical nurse

pl

a;

nu

46

specialist, as described by the American Nurses Association,
includes identifying populations at risk for health
problems, and planning and evaluating health programs for
such. groups (ANA. Social Policy' Statement, 1980). The
investigator makes the assumption that the NICU volunteer
support parents are an at risk group for health and
parenting dysfunctions, and that the nurse has both
individual and group caregiving roles in the NICU support
program, .Although the relationship between the nurse and
volunteer parents will not be studied as such in this study,
nursing implications for the specialist who is involved in
program delivery or who serves in a primary care role with
NICU families will be identified after data analysis.

In order to analyze the nursing implications Of the
study data, a nursing conceptual model will be described. A
number of current nursing theories appear to be congruent
with the family ecological framework because of their
systems approach, considering the person and environment.
Rogers nursing theory also describes the transactional
processes, the mutual and simultaneous influences of the
person and environment, yet is rather exoteric and more
difficult to use to explore specific nursing
applications(l980). -

A recent framework for viewing nurse-client or nurse-
family relationships, that is consistent. with. the :major

nursing theorists, is a model developed by Florence Roberts.

47

This model was first developed. by' Roberts as a ‘parent
education model from a project that focused on public policy
Of child care and parent education issues(1983). Roberts
has not developed the model to the level Of nursing theory,
however, it appears to be a useful model in a health care
situation where parents do not present themselves directly
for health services or where parents health care needs are
addressed in a group setting. Roberts identifies a key
philosophical stance that provides the basis for the model.
That is, nurses and clients are both considered experts on
care, with the nurse functioning basically as a resource
person for the client. The nurse maintains an at awareness
that there is a partnership at work in the relationship,
with the client participating as much as possible.

The model is composed of three primary components:
client needs, needs assessment and nursing responses (see
figure 5). Central to the model, is needs assessments, a
responsibility that is shared by the nurse and the client.
Roberts indicates this relationship with broken lines on the
model, as a way Of denoting that the responsibility for
needs assessment is shared by the nurse who assesses client
needs. The client must validate that any needs identified
by the nurse are indeed "real" needs.

Four levels Of client needs are identified on the
model: 1) current needs met, 2) behaviors likely to lead to

future problems: some needs recognized by nurse but not by

48

 

 

 

 

 

 

CUENT NEEDS ,3
I. cumENTNEEm NET; NO BEHAVIORs LIKELY
TOLEADTOFUTUEPFDEEMS
----------------------------------------- :‘e. .0.
u. BEHAVIORS UKELYTOLEADTOFUTURE PROBLEMS; .o.’
SONENEEDSRECOGVIZEDBYMJRSEBUTNOTBYCUENT. 0::
I
0. g. '
e . I
e. .. I
.0 .0 l
o . I
e. .. '
e e I
o-— ------ - ..... nus-cues-- ..... -.. O. |
FEES .0 : w
0. e... 2
"mum NEEDS NOT BEING NET. ,o W ,o : E '5
.0. .0. : I.” l Lu
0. 9. I 2 : g
i '2 '
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1 E
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__________________ .° I 5
o 0 l 3
e. 0. I Q
N. UNNET NEEDS :. '“
I

SURVIVAL I

CQIAmRATIVE

 

PFDTECTNE

 

 

NURSING RESPONSES

 

l

 

FIGURE 5 : ROBERTS NURSING mDEL (FROM : ROBERTS . F. AND CLEMENT , I. , A THEORETICAL
APPROACH TO NURSING CARE. NEW YORK : WILEY , 1983.)

 

 

49
client, 3) current needs not being met, and 4) unmet needs
threaten survival. These levels of needs identified are
graded according to how well needs are being met at a
particular point in time.

Four nursing responses are also delineated that are
related to the particular level of client functioning and
needs. These responses are labeled: 1) protective, 2)
collaborative, 3) educative-facilitative, and 4) protective.
The responses are designed so little intrusion as possible
is made into the client's power and independence. Of
particular importance to this project, are the levels I,II
and III with the appropriate nursing responses of
collaboration, educative-facilitative and prospective. The
collaborative response considers that both the client and
the nurse share responsibility for identifying needs and for
finding ways Of meeting those needs. This response would be
appropriate when a volunteer parent directly brings a health
concern to the program nurse. The educative-facilitative
response is most appropriate for clients who are engaging in
practices that are likely to lead to problems in the future
or have unmet needs that they are not ready to recognize. A
volunteer training session designed to have parents re-
examine their own losses connected with the NICU experience,
and add information on the normal phases Of resolving grief
may be an educative-facilitative response to a group need.

The prospective response is used by the nurse to anticipate

50
needs usually based on growth and developmental changes in
the client or family. An example Of this response may be
the program nurse Offering a volunteer "supervision and
support" session that deals with school entry and the
concerns Of NICU parents when the children in many Of the
volunteer's families are reaching school age.

The broken lines used in the model signify the
dynamic nature Of process. A client may be at different
need levels in relationship to different health care
concerns. The goal of nursing care is to move the client up
the need levels toward Level I and move the nurse toward the
prospective role. For a support program nurse, this may
mean referring the parents to other nurse providers when a
protective or an extended collaborative role is needed.

Roberts has adapted the original model to reflect the
assessment and responses to family needs. This aspect Of
the model has not been thoroughly developed. Roberts
primarily utilized areas Of family functioning and adapted
the assessment Of the individual model. Five broad areas Of
family functioning are identified in the assessment
including: 1) the management function, 2) the boundary
function, 3) the communication function, 4) the emotional-
supportive function, and 5) the socialization function.

Although this model does not approach a well
developed theoretical model, it would appear to be a useful

model for the purposes Of this project. Using the proposed

51

conceptual model, the nurse can be viewed as one component
Of the NICU support program. Then the transaction between
the nurse and the volunteer parent can be analyzed. Roberts
modhl can be used to describe the nature Of the transaction
between the nurse and the volunteer parent (figure 6). Thus,
the model seems well suited to guide the nursing
implications of the program.

 

 

 

 

FMYWI’ mm mm 7 mm
mm ' m ‘ | man
V § 9 p «a-
0 ‘

NURfiEHUEWT
TRNNMBRON

FIGURE 6 : ROBERTS NURSING MODEL INTEGRATED WITH THE FAMILY
EKXJJJGKHHJJDNCEPTUALNKINB.

 

 

 

52
Summany

In summary, the conceptualization Of the research
concern, NICU volunteer support parents, has been developed
to assist in focusing the research direction Of the study of
the research questions. Background characteristics will be
broadly assessed including demographic, family-related and
NICU historical characteristics using a family ecological
conceptual model. ‘VOlunteers perceptions Of [effects. Of
program participation that have occurred for the volunteer
will be ‘viewed as outcomes of transactions between. the
volunteer, in the context Of the family, and the support
program as an aspect Of the social environment. Level Of
program participation will also be assessed as an indicator
of outcomes Of such transactions. Roberts conceptualization
Of the nurse-client, nurse-family relationship will be

utilized to analyze the nursing implications Of the study.

CHAPTER I I I

LITERATURE REVIEW

Introduction

The purpose Of this literature review is to examine
those studies that have been done in the past that are
useful in understanding characteristics Of NICU support
parents, their level Of participation in a support program
and the effects of participation in a volunteer support
role. The researcher is not aware Of any investigations
that describe, in a systematic manner, characteristics Of
NICU support parents or the effects Of their participation
in NICU support roles. Because parents who volunteer for
the support role are parents Of NICU involved children,
studies that describe characteristics Of NICU parents and
their parenting experiences will be used for this review.
In order to better understand the effects Of participating
in a helper role, studies in related fields that describe
those persons who function in a volunteer support
relationship will be examined. Only those studies that
focus on the support person who has coped with a physical

and/or psychological problem in the past and who now

53

54
volunteers to support a person with a similar problem will
be reviewed.

Literature from these sources will be reviewed
utilizing‘ the ecological conceptual model. Of ‘the. study.
Thus, the studies will be examined for informatiOn that may
describe resources and demands Of the NICU volunteer in the
context Of the family. The nature Of the transaction
between the volunteer and the support program as an aspect
of the social environment will also be considered. Since
most Of the studies that will be reviewed do not use the
concepts resources and demands, the reviewer will analyze
each study tO determine which aspects Of the study fit with
the notion of resources and demands. In the conceptual
model Of the study, three time periods are related to the
research questions: the time Of the NICU event: the time
when the volunteer parent begins participation in the
support program, and the period Of time after the parent has
been involved in the support role. It may be helpful to
examine what is known about the NICU parent's resources and
demands organized around these three time periods. This
information will than be used to guide the development of
the study.

Prior to undertaking the review, it is important to
note that most of what is written about NICU parents in
general, is primarily related to parents Of premature

infants. Studies Of parents whose infants have congenital

55
anomalies or acute neonatal disease will not be included in
this review. The former has a distinct body Of literature
in which parental adaptation to the child's handicap and the
early NICU experience are interwoven and difficult to
distinguish. The latter group has not been carefully
studied , since many children with neonatal illness are also

born prematurely.

The Period Of the NICU
Event: Demands and Resources

Most of the early research that described parents of
premature infants were focused on the mother's responses to
the birth Of the premature. Caplan et al. (1965) and Kaplan
and Mason (1960) conducted the classic studies that
described the emotional problems Of mothers who deliver
prematurely. Data consisted of records representing eighty
six cases Of premature births. No sampling procedures were
used. Data was collected by observation and interview.
Families were visited by the researchers within seven to ten
days after birth during a routine public health nursing home
visit. The interviews ‘were conducted. by a ‘variety Of
interviewers. The families were visited approximately
eleven times during the three months following the infant's
discharge from the premature nursery. Caplan analyzed 10
cases and had an independent judge rate the parental outcome
as "healthy" or "unhealthy". Healthy was defined as

characterized by unambiguous, positive evidence that the

56

dyadic relationships among family members were at least as
"healthy" as prior to the premature birth. "Unhealthy" was
defined as evidence exist that one dyadic relationship in
the' family appeared to be worse after the birth. Healthy
outcomes were characterized by the parents actively
gathering information about the baby and prematurity,
showing continuous awareness Of negative feelings and
expressions of feelings with others, and the seeking Of help
from within the family or the community. In the unhealthy
outcomes, the parents were not able to assess the reality of
the situation, could not express feelings, and were
reluctant to seek or accept help even from each other.

Kaplan and Mason (1960) also cOnducted a study Of
maternal reactions to premature birth by interviewing 60
families during the period following the premature birth and
continuing until the baby had been home for two month. By
examining the clinical material from these interviews, the
researchers described mothers Of premature infants as
agonizing over the survival and long-term health Of the
baby, and feeling guilty and experiencing loss of self-
esteem from an inability to bear a normal, healthy child.
Four psychological tasks Of the mother whose infant is born
prematurely were identified. These include: 1) preparation
Of the possible loss of the child while hoping the baby
survives: 2) acknowledgement of maternal failure to give

birth to a normal full term infant: 3) resumption Of the

57
interrupted process Of relating to the baby: and 4)coming to
understand the special needs and growth patterns of the
premature infant as different from the normal full term
infant. I

These early studies Of the effects Of prematurity on
the mother are limited by many factors. The sample
selection, small number Of the sample population, and the
lack Of sample characteristic such as socioeconomic
levels,and cultural backgrounds, limits generalizabilty of
the study; This is especially important ‘when labeling
"good" and "bad" processes and outcomes. The infant's
behavior as a potent influence of the mother-infant
relationship was also not assessed. Longitudinal follow-up
Of the mother, infant and other family members was not
accomplished. It is also important to consider that these
studies were conducted during a period Of hospital care when
parents were not allowed to touch or care for their infants.
However, these early studies were able to draw attention to
the experience of the mother Of the premature infant and
provided useful descriptive information for future research
and clinical practice.

Since the advent Of neonatal intensive care units,
much attention has been focused on the effects Of mothers
having decreased access to the infant which limited the
physical and emotional intimacy of ‘the early' caretaking

experiences. Early research endeavors were primarily

58

focused on the timing and the extent Of the first
contacts(Klaus and Fanaroff, 1973) ; Leifer and Leiderman,
1972) . Results of these and other more recent studies
indicate that early contact may enhance parent's initial
experiences and facilitates early parent-infant
relationships. However, early contact studies have not
consistently indicated comprehensive, long term effects on
the infant that can be attributed directly to the early
contact experience (Goldberg, 1982: Liederman, 1982).
Although the benefits Of early contact may be short term,
access to contact with the infant could be viewed as a
resource for NICU parents. The lack Of such access, by the
transportation Of the infant to a regional intensive care
unit and the mother remaining at the hospital Of delivery,
could be viewed as an additional demand. The review Of this
body Of literature is beyond the scope Of this chapter, yet
it is important to note the need for longitudinal research
that addresses a more comprehensive view of maternal contact
over time and the effects on all family members.

Since the advent Of parental visiting in the NICU,
studies have continued to support the notion that most
parents are under severe emotional distress at the birth Of
the preterm infant and subsequent hospitalization in the
NICU (Klaus and Kennel, 1982) . One study was designed to
specifically evaluate parental reactions to the demands Of

prolonged visiting Of sick and premature infants in NICU

59

(Harper, 1976). Ninety-one families whose infants had been
hospitalized two or more weeks were mailed questionnaires
with a 64% response rate. Three families returned the
questionnaires unanswered and noted that the questionnaire
stimulated unpleasant memories for the family. Correlations
of raising levels of anxiety were associated with increased
infant morbidity, and increased infant contact. Mothers had
a slightly higher mean score on anxiety than fathers,
however this difference 'was not significant" In
retrospective questioning, only 10% Of the parents reported
they would have visited less.

Paludetto, et a1. (1981) also studied the reactions
Of sixty parents who were allowed unrestricted access to the
NICU and were encouraged to touch, change and feed their
infants. The increased contact with their preterm infants
appeared to also increase the distress of those families who
participated in the study. Yet, at the same, time extra
contact stimulated paternal interest the child. The authors
indicated that if unrestricted access to infants does
increase the parent's distress, the 1NICU staff is then
challenged to provide the resources to cope with the stress.
This study and the latter study raise concern about whether
accessi to the critically ill infant is a :resource for
parents, or a resource for the baby at the parent's expense.
Visiting in the NICU appears to be a stressful demand for

new parents.

60

The notion that parental reactions to the birth of
the preterm infant include a grief response to the loss of
the fantasized, normal infant appears to be supported by a
study designed to assess grief feelings and behaviors.
Benfield (1976) studied 101 mother-father pairs whose
critically ill infants were transported from the hospital Of
birth to a regional neonatal intensive care nursery. The
sample parents were 97% white and predominantly’ middle
class. This was the firstborn child for a little less than
one half the sample. Forty-one infants were classified as
low birth weight at birth, gestational age was not reported.
The authors designed a questionnaire that included
descriptions Of 13 feelings or behaviors related to the
grieving process. Most parents in the study reported grief
reactions similar to those parents whose infants do not
survive the newborn period. The level Of anticipatory grief
did not appear to be associated with the severity Of infant
illness.

Data was collected by parents filling out
questionnaires on the day Of the infant's discharge. From
reported clinical Observations, the day of discharge is a
potent stressor event in itself and the timing Of
questionnaire administration may have affected the parents
response. Benfield's study appears to support the findings
of descriptive early studies of Kaplan and Caplan, with a

sample population Of middle class families. The study is

61
limited by measuring parent's feelings at only one point in
time, on a highly stressful day, in 'view of the 'well
accepted notion that grief feelings and behaviors fluctuate
over time.

In a small qualitative study (N = 10) among a
demographically homogeneous groups Of parents, individual
variations between parental perceptions Of their low
birthweight infants, individual coping styles and adaptation
to the stress of premature birth were described (Newman,
1980). Two major approaches to family coping were
identified. One approach was "coping through commitment" an
intense involvement in care Of the infant. The other style
was described as "coping through distance", identified by a
slower acquaintance process, expression Of anxiety and
reliance on professional care. This study was useful for
bringing to attention the variability Of family coping
styles and the description Of two different patterns Of
coping. However, is not known how the particular styles of
coping relate to parent and child outcomes and how the
parent's current environmental demands and access tO
resources affects the coping style.

Another recent qualitative study Of the NICU
environment and parents was undertaken by Bogdan and
colleagues(l982). This study drew attention to the
complexity and intensity Of the NICU environment for parents

of infants. Using participant Observation methodology,

62

researchers described parents and professionals and the
nature Of their transactions in the NICU setting. Bogdan
identified the family's lack of prior experience or
knowledge in dealing with such a system as a major factor
that contributed to the difficulty parents have in coping
with the demands of the setting. Bogdan discovered that the
parent's communication system is radically different from
that of the NICU health provider. The NICU care providers
appeared to have developed their own system to describe and
selectively feed information to parents about their child's
health status and recovery potential.' This mode of
communication is reinforced by the health care providers
inability to accurately predict the child's outcomes from
current knowledge and research. This study supported the
notion that the NICU is a demanding environment for parents
to cope with and the patterns Of transacting successfully
with the system seem to be Obscure.

Another interesting finding Of this study is the way
NICU staff categorize parents and thus respond tO their
needs. The researcher's discovered that the NICU staff are
likely to categorize the infant's parents as good, not so
good, and troublemakers. Parents are identified as "good"
parents if they:

understand: ask appropriate questions: understand
the baby's condition. and. potential outcomes, which are

usually ambiguous: are grateful for the care that is
available to their baby; understand and abide by unit

policies.

63

care about the baby: visit regularly: respond in
appropriate ways to good news and bad: appear to "bond" to
the baby.

show potential for giving the baby proper care after
they leave the hospital: staff believes that social class,
race and age are related to being a good parent; the staff
like to talk to parents; parents are liberal with their
praise for the staff and let them know how they have been
treated by the staff. (Bogdan ,1982 ,p.12)

Parents described as "not so good", have the opposite
characteristics. They do not have the ability or refuse to
show that they understand the condition Of their baby.
Parents do not visit, call, or show interest in the babies.
Many are poor, young, and culturally different from the
staff. Troublemakers are those parents who make
unreasonable demands on the staff. They are not satisfied
with the treatment that their child is receiving and rather
than being grateful, are overly critical. The staff
believes they may be looking to sue them.

This study added more support for the diversity Of
families who cope with a preterm birth. It was useful in
understanding how the NICU can be a demanding environment
for families with somewhat rigid staff expectations for
parent behavior. Those parents identified as "not so good
parents" also appear to have many other environmental
demands and thus may have had difficulty coping with the
additional demands of the NICU setting.

This study was also useful because former NICU

parents are frequently chosen to be support parents because

the staff perceives them as "good" parents. Volunteer

 

64

parents may share those characteristics of parents that

(high resource)parents. Whether

Bogdan describes as "good"
these "good" parents by staff assessment are those parents

that would be most helpful to other parents experiencing the

NICU is an important area for future study.
In summary, it appears that the results Of studies in

the literature supports the notion that most parents are

extremely stressed by the birth and subsequent

hospitalization Of their infant in the NICU. Early research

while methodological weaknesses are apparent,

studies,
information in order to

contribute useful descriptive

further understand the mother's reaction to such a stressor.

However, little is known about the resources mothers use to

deal with the increased demands Of a preterm birth.

Research is also lacking on family system responses to the

infant's hospitalization and the interaction between family

especially the father and siblings, at this time.

members,
attempted to document grief

Although Benfield's study

feelings and behaviors Of parents, it lacks preciseness in

identifying a grief trajectory over time and its interaction

with parenting behaviors. Although early and extended

contact has not been demonstrated to have significant long

term effects, it does appear to be related to additional

demands on the parents, with no reports as to the resources

that could be helpful to parents. One such resource that

nay be of help is some kind Of assistance in dealing with

 

65
the NICU and the staff as a unique environment. Recent
qualitative research supports the notion that parental
coping with the preterm infant and the NICU experience
differs across families. Future research is necessary to
study the resources and demands Of the NICU parents and

their transactions with the NICU environment.

Early retrospective studies indicated that
prematurely born infants were more vulnerable to child abuse
and neglect, failure to thrive outcomes and other parenting
dysfunctions(Elmer and Gregg, 1967, Klein and Stern,1971).
Recent prospective studies fail to confirm these earlier
study results (Leaventhal,198l) . Yet, for all the research
concern about the child outcomes of dramatic parenting
dysfunctions, few investigators have attempted to study the
parents of premature infants. Excluding the few studies Of
parents during the initial crisis of the premature birth,

most studies have focused on predicting and explaining the

varying developmental outcomes Of premature infants

(Parmalee,l98l:sigman,1981). What was discovered in such
studies, is the notion that parenting a premature infant is

difficult work, especially in the first year Of life

(Goldberg,l983:Brown and Bakeman,1980). Because Of the

infant's neurological immaturity, premature infants are

difficult to arouse for social interaction, and irritable

66

and difficult to soothe(Als,1976). The infant's lack of
social responsiveness to parent's caretaking makes the
infant's demands more difficult for parents. Although a
review Of this literature is beyond the scope of this
chapter, the preterm infant's behavior is now acknowledged
to be a potent contributor to the nature Of the parenting
relationship .

Minde and colleagues (1980) Observed 32 mothers of
very low birth-weight infants during visits to the nursery
and during infant feedings at home. Interaction patterns of
the mothers were categorized as high, low or middle level of.
interaction. One quarter Of the mothers were in either the
high or low category with one half‘ in the middle category.
Certain psychological variables within .the mother's
background were significantly related to maternal activity
patterns. Low interacting mothers reported poorer
relationships with their own mothers and with the father Of
the infant. High interacting mothers reported more
satisfying interpersonal relationships. Mothers maintained
their position in the three groups at evaluations done at
three months post discharge. In analyzing the infant's
contributions, mothers who were in the high interaction

category co-occurred with infant's abilities to send social

signals.

 

 

 

 

67

Minds (1980) also studied those mothers Of premature
infants who participated in parent support group meetings
while their infant was in the NICU. Sixty infants weighing
under 1501 grams were assigned to experimental or control
groups. Approximately 75% Of the mothers were married, most
were in a low socioeconomic class and almost 50% had
experienced past Obstetric difficulties- Experimental
mothers attended approximately seven to twelve weekly
sessions following the infant's birth, co-lead by a nurse
coordinator and an experienced NICU mother. Observation Of
specific mother and infant behaviors were made in the NICU
and at monthly home visits for the first three months post
discharge. Interviews were conducted during the
hospitalization at discharge and at home.

Data analysis indicated that mothers in the
experimental group visited their infants significantly more
Often in the hospital than control parents(P<.05) . There
were significant differences in all areas tapped by the
interview especially comfort in caring for their infant and
satisfaction with health care(P<.05). The analysis Of
infant maternal behaviors disclosed no differences between
the two groups during the ”first two weeks. At three, four
and five weeks experimental mothers were significantly more

active in interaction. than comparison mothers. At three

months, experimental mothers talked, looked and touched

 

68

their infants for longer periods Of time than control

mothers.
In order to document any long term benefits of

parent's participation in a support group during the NICU

hospitalization period, Minde and colleagues(l983) attempted

to contact these same parents at one year Of age. Fifteen

experimental and sixteen control families participated in
the one year evaluation. Of these families one control
mother abandoned her infant, one experimental mother was
hospitalized for a schizophrenic episode, six infants showed

signs Of gross developmental problems, and four set Of data

were lost in the computer.

The mother and infant's behavior were Observed during

an infant feeding and play situation in the home.
Experimental mothers spent less time feeding their infants
and talking to other persons that did the control mothers.

They also provided more physical contact during the infant

feedings. The infants behaviors that differentiated the

experimental group were feeding themselves more, playing

more, and wanting to share some of their food with their

mother. Observations were also made of mother infant play

sessions and following a brief separation, a post-reunion

play episode. During the initial play sessions, the

experimental infants looked at and touched their mothers

more often and also showed more fussing. During both

episodes, experimental mothers looked at their infants less

 

#11?- ! h _ !

 

 

69
but vocalized to them more Often. After the reunion, both
groups Of mothers talked to their infants more, but the
experimental mothers provided their infant with more
physical support following separation.

The researchers interpreted these results as
experimental mothers encouraged more autonomy and
sociability with their infants. They Offered additional
evidence from analysis Of occupational, educational, and
psychological changes that tOOk place during the mother's
first year. The data indicated that experimental mothers
showed a significant improvement in their relationship with
significant others and an increase in personal autonomy.

This study is of interest because Of the
investigator's provision Of a supportive intervention to a
group of NICU mothers. The addition of the resource Of a
support group Of NICU mothers during the period Of
hospitalization may help mothers cope with the intense
parenting demands of the first year. One concern about the
sample group Of mothers however, is the participation rate
of those mothers assigned to the two groups. The
characteristics of those mothers who refused to participate
in the experimental groups and differences between these
mothers and participating mothers were not reported.
Perhaps those mothers who are willing to participate in

support group activities have more resources available that

enable them to do so.

 

 

70

In a more recent study Minde (1984) explored the
influence Of medical complications on premature infants and
mothers' caretaking. This study is a substudy of a larger
study on the effects of specific medical complications Of
prematurity on outcomes. Sixteen matched mother-infant
pairs Of sick and well infants were Observed at feeding time
at a two month home visit. The sick infant's behavior was
similar to the well infants. The mothers Of the sick
infants touched and smiled at their infants significantly
less than did the mothers of the well infants. Data
indicated that mothers Of seriously ill premature infants
showed persistently low interaction with their infants. In
order to further explore the cause, the total group Of sick
infants were divided into those who were seriously ill
(rated as 2 or 3 on the Minde morbidity index) and who were
hospitalized for more than 36 days and for less than 17
days. Mothers with infant who had short illnesses increased
their vocalization, touching and looking, while mothers Of
infants with long lasting complications showed no
significant change over time.

Another hypothesis was tested to measure the
contribution Of past experiences to mother's behavior with
premature infants. Data from interviews with the mothers
were examined. Questions related to the mother's present
pregnancy, the social conditions Of the family, and past

psychological events Of her life were analyzed. Mothers

 

 

71
whose infants had long illnesses, independent of their
personal background, showed a uniformly low rate Of
interaction with their infants. Data confirmed that a long

term illness in a premature infant had a more powerful

 

effect on the mother's degree of interaction than have
otherwise important psychological variables in the mother's
background. This contradicts the findings of Beckwith and
Cohen (1978), Field et al. (1978) and Goldberg, (1980) all

 

Of whom found mothers Of "sick" premature infants to
overcompensate in interactions when the infants had
recovered. The severity Of illness was not specified in
these previous studies. Perhaps infants in these studies
were not as seriously ill as the Minde population. Thus, it
seems important to assess NICU parents for the length Of

hospitalization and the severity Of illness.

There have been only a few studies Of mothers and
NICU-involved children that have extended beyond infancy.
Blake and Stewart conducted a descriptive follow-up study of
160 infants whose birth ~ weights were under 1500 grams.

These infants followed in a hospital- based clinic after

discharge. Data was collected by Clinical Observations and

infant health assessments. The researchers indicated that

in spite of attempts to minimize maternal separation and the

distressing aspects Of the NICU experience, an emotional

crisis was Observed in mothers. This crisis did not resolve

itself until after the infant was discharged. The authors

 

72
identified three phases of post NICU-discharge adaptation.
An initial honeymoon phase was followed by a phase Of parent
exhaustion. A phase where problems disappear occurred at
the. same time that the infant was showing increased
responsiveness. Although the duration and the degree of

crisis showed variation across families, two variables were

identified that appeared to influence outcomes. Mothers who

received support and sympathy from the baby's father

appeared to have least difficulty. A rigid maternal

personality and circumstances surrounding the birth which

predisposed to feelings Of guilt and failure seemed to
prolong the crisis. Although follow-up evaluation indicated
that the parents formed satisfactory relationships with

their children, the mothers tended to be anxious and

overprotective, and the children mildly overdependent, shy

and anxious.

The description Of outcomes in mothers and children

in the Boyle study is similar to that reported in the

literature that describes parents whose children were

expected tO die. A classic study Of vulnerable infants and

their parents contains information about parents of

premature infants (Green and Solnit, 1964) . A recent case

study also describes potential parenting difficulties

(Naylor, 1982).
Parental mourning is described in the literature as

premature mourning for the acutely ill young child, and

 

73
mourning the loss of the hoped for normal, healthy infant
when a defective infant is born. Green and Solnit (1964),
in a classic study, described what they called a "vulnerable
child syndrome." This syndrome describes children who are
expected to die prematurely by their parents and who may
subsequently show a disturbance in psycho-social
development. Cases Of approximately fifty children were
examined in this descriptive study. Seventeen of the
children experienced a critical illness under the age Of
twelve months, ten during the neonatal period. A group of
clinical features Of the syndrome were identified in the
study children. These included 1) difficulty in separation,
2) infantalization, 3) bodily overconcerns, and 4) school
underachievement. Separation difficulties included:
infrequent use Of babysitters, sleep problems for baby and
mother, and difficulties with school separation. Parents
were Often characterized as overprotective, overindulgent,
and oversolicitous, and Often unable to set disciplinary
limits. This parenting style then became reflected in the
child's behavior, as overdependence, disobedient, irritable,
argumentative, and uncooperative. Mothers were depicted as
being overly concerned about such things as minor
respiratory problems, bowel movements, and skin color. The
child was frequently seen for hypochondriacal complaints,
such as stomach pain, and headaches. School difficulties

appeared to be related to separation anxiety, and inability

 

 

 

 

74
to concentrate freely on the learning exercises.

The author's do acknowledge that all children who
recover from a critical illness do not develop this syndrome
and identified numerous predisposing factors. Of concern in
this review are the following factors: 1) the patient is the
first child born to Older parents after they had resigned
themselves to being childless, because of fertility
problems, frequent miscarriages or stillbirths, 2) the child
was premature, 3) the mother was told during the pregnancy
that the baby may not survive because Of the pregnancy
complications, and 4) the child has an acquired handicap or
congenital illness.

The author interpreted the reactions to be
pathological after- effects Of a persistent, disguised
mourning reaction that was evoked by the child's critical
illness. The researchers believed that parents appeared to
experience a modified grief reaction when they are informed
that the child may die. This grief reaction is prematurely
aborted and incomplete when the child then survives.

In addition to the small sample size and
methodological weaknesses, this study must also be placed in
historical perspective. The study was accomplished prior to
the regionalization of intensive care units, where the
increase in technology' and. knowledge has increased the
survival of infants who most likely would have died in the

past. This study was also conducted at a time when hospital

 

75
policies prevented the parent's contact with the preterm
infant until discharge.

A case study Of premature mourning and failure to
mourn that describes the conflict between mothers and their
intellectually normal children who were critically ill, has
recently been published (Naylor, 1982) . Two cases of mother
infant dyads were analyzed. Similar to Green and Solnit's
findings, Naylor found that during the dependency Of the
child's first year, repression Of mourning continued.
However, this repression appeared to give way, stimulated by
the toddlers assertiveness during the separation-
individuation phase. In both cases, mother's defenses
against angry, hateful feelings broke down when the child
was perceived as aggressing against the mother. The
children perceived themselves to be hated and reacted with
behavior that only exacerbated their mother's anger. The
author acknowledges that anger can be a powerful component
in overprotection, however, there was no behavior in either
parent suggestive Of overprotection. Acting out of anger is
in contrast to the finding of Green and Solnit. The author
acknowledged the limitations Of case study methodology, but
hopes that the research would stimulate more research
interest in the topic.

Boyle (1977) , conducted an investigation that
compared a group Of 55 families who had children born at

birth weights over 2500 grams with 75 families who had

76

children under 1501 grams and hospitalized in the NICU.
Most of the families were Of average income, and intact
families. The purpose Of the research was to document
whether the preterm children were a continuing burden to
their parents. This would be evaluated by interviewing
parents about the Child's functioning and extra difficulty
in caretaking. Seven areas Of functioning were chosen for
evaluation: development, health, play, toilet training,
feeding, sleeping and discipline. Parents Of the preterm
infants gave less favorable evaluation Of their children in
the areas Of development and play. These differences were
accounted for by a subgroup Of children with neurological
and intellectual deficits. Boyle, Son. the basis Of no
significant differences in caretaking problems, concluded
that there is no continuing impact on the family Of the
preterm infant. Although this research purports to be a
study of the impact Of a preterm infant on the parents,
caretaking was the only outcome measured. Another concern
is the reported incidence Of the divorce and separation Of
study families. Approximately 13% of the families were
separated or divorced by the time of the interviews which
occurred 3-5 years after the infant's birth. NO comparison
figures are given for such rates with the NICU population or
the population as a whole.

White and Dawson(1981) designed a study of families

who were categorized as high, medium, or low risk based on

77

newborn infant's health status. The study variables were
family solidarity, parent concerns, parental depression,
infant status, parents' perception of their infants
behavior, and life events in the family. Risk was
conceptualized as risk for physiological disequilibrium
and/or developmental delay. The sample consisted of 53
families with low risk infants, 33 families with moderate
risk infants and 13 families of high risk infants. Risk
status was determined by using the Brookline Early Education
Project Inventory. Seventeen families were originally in
the high risk group, but three families did not return the
questionnaires. Data was collected from both mothers and
fathers.

An investigator developed parental reaction
questionnaire and family solidarity scale were used in the
study. In addition, the Beck Depression Inventory, the
Social Readjustment Scale, and the Broussard Neonatal
Perception Inventory were used. A package Of
questionnaires for both mothers and fathers were mailed to
the families when the infants were three months Of age and
six months of age.

The infant's score on the Risk Inventory were
negatively correlated with the mother's age and education.
There were no significant differences among the three groups
or between mothers and fathers on the Life Events scale.

The majority Of parents in all groups reported perceiving

78
their infants behavior as better than that Of the
hypothetical average infant. NO parental concern items
discriminated among groups. However a trend emerged in
response to a rating of the degree of concern parents
experienced relative to home activities. Parents in the
low, and moderate risk group expressed more concerns.

When the three risk groups were compared for
incidence Of depression, the highest percentage occurred at
three months among mothers Of the low risk group. However
the difference between the number Of mothers in the low
moderate and high risk groups were not significant. At six
months, low risk group did show a significant decrease in
the numbers Of mothers who scored in the depressed range.
Additionally, there was a significant difference between
high risk and low and moderate risk groups on the number of
mothers who returned the depression questionnaire. Five of
the thirteen mothers in the high risk group did not return
the depression questionnaire or the life events scale at
six months, even though they did return the other mailed
materials.

The construct family solidarity, defined as a
closeness Of family members to each other, was
operationalized using four categories: togetherness,
communication, team performance, and ritual. A scale was
designed to measure instrumental and expressive dimensions

Of each Of the above categories. Chronbach's alpha for

79

communication and ritual were stronger (communication 0.69
and ritual 0.69, togetherness 0.45, and team performance
0.54). Analysis of the data indicated that those families
with infants in the high risk group reported less parental
going out, more reported eating together, less closeness in
the marital relationship, greater dissatisfaction with the
sexual relationship and low frequency Of sexual intercourse.
Mothers Of the high risk infants had more responsibility for
infant care, and perceived that they received less help in
comparison to the other groups. Communication between
husband and wife did not change in all three risk groups,
but the high risk group did indicate less agreement than
the other groups. I

The investigator's have added to the very limited
knowledge base Of families with at risk infants, yet the
study raises many questions. The risk status of the infants
was determined during a two week post birth period. There
is no data to indicate what the health status of the infant
was at three months and six months when the parents
responded to the questionnaire. Thus, the risk status seems
to relate to the infants initial health status. Attrition
Of subjects, especially those parents with high risk
infants, may indicate that the mailed questionnaire was
either too difficult, time-consuming, or perhaps just tOO
threatening to parents who have already been labeled in the

popular press at risk for parenting problems. Survey

80
methodology is probably not the ideal research methodology
to use with stressed families, such as those with high risk
infants. Perhaps it takes a well functioning family to even
participate in a mailed questionnaire survey.

One other group of studies has been selected to be
included in this review, because they provide some
information. on the effects Of resources and. demands on
parenting functions. Hunter and Kilstrom (1978) assessed
255 infants and families discharged from the NICU. Although
the purpose Of the study was to document the incidence Of
child abuse and neglect, some interesting information about
families was Obtained in the study. Data were Obtained by
family interviews, medical chart audit, newborn intensive
care unit visiting records, outpatient clinic records,
contact with local health providers and state records.
Eight families were reported for neglect, and two families
for abuse. Of the eight families reported for neglect, five
were cited for failure to provide needed medical care for
acute or chronic illness and two for inadequate nutrition.

In a subsequent analysis Of Hunter and Kilstrom's
data, the researchers examined the data from those parents
who had parental histories of abuse and neglect in their own
childhood. Out of 49 families, nine were reported for abuse
and neglect. Forty families were then identified as non-
repeating families and were studied as a subset. In

addition to sharing with maltreating families an abusing

81

background, they' were also similar in respect. to young
marriages, early pregnancies in the marriage and financial
difficulties. However they were different from abusing
families in the following ways: less ambivalence about the
pregnancy, more open in talking about early experiences and
concerned about the parenting role, healthier infants and
shorter stays in the NICU, more frequent NICU visits by the
mothers, father and other extended family members. The
social resources Of the non-repeating families also differed
from the maltreating parents. From interview data, at the
time Of the birth, these families ‘were :more likely' to
discuss concerns with important friends, extended family,
church or other social groups and use community agencies.

Pascoe in a related study located 30 of the 41
families who 'were identified at risk ‘using' the Hunter-
Kilstrom scale in the original project. A group Of 39 non-
risk families were matched to form a comparison group. The
69 children were 2 1/2-3 years old at the time of the study
from rural working class families. The relationship between
mother's life change sCores, social support and the
preschool home environment Of their children were analyzed
three years after discharge from‘the NICU. The findings
indicated that the number Of reported life changes that
occurred to mothers since the births Of the children were
not related to the amount Of home stimulation provided the

children; however, mothers who reported more social support

82
provided a more stimulating home environment unrelated
number Of life changes.

There are few studies of parents of NICU children,
after their children's discharge from the hospital, that
indicates how the experience Of the NICU affects family
members. A clinical picture emerged of families stressed in
the first months following discharge, with those families
with adequate family resources being able to cope adequately
enough to protect infant growth and development. However,
it is of concern whether the impact of the NICU experience
is still felt on the child's socio-behavioral outcomes
because Of the parent's inability to access resources to
help them resolve earlier grief reactions. Those families
with limited resources appeared to be at greater risk for
developmental problems for all family members. The few
studies reviewed provide primarily pieces Of descriptive
information about the family system and neglect the
interrelationships Zbetween ‘the family ‘unit and its
environment. Current studies do not describe the family's
adaptation to the premature birth over the time period of
the preschool years. Although this limited review did not
uncover any factors that could be linked in a causal way to
parenting or other family dysfunction, characteristics that
may indicate greater risk for mothers Of preterm infants
were described. These characteristics include: lengthy

hospitalization Of the infant, visiting patterns, history of

83
pregnancy complications, lack of social support, rigid
personality, unresolved grief, difficulties during the
child's stage of individuation, and handicapping condition
Of the infant.

The Pepiod Of Voiunteer
Helping: Demands and Resourcgs

Because no research articles were found on NICU
parents who volunteer for support roles, studies in the
self-help and helper therapy literature bases, were reviewed
in order to identify potential effects Of program
participatiOn. Studies from the self-help literature are
included since this particular volunteer program purposively
structures the volunteers experiences to (include peer
support relationships between the volunteers, similar in
nature to the mutual-help process. The helper therapy
literature described effects of participation in the helping
role. Studies will be} included if a description Of either
the characteristics of the participants or demands and/or
resources of participation were given. Additionally, the
studies must have described a volunteer helper functioning
in a program that supports persons who share similar
physical or psychological health problems.

Trainor (1982) designed a study Of ostomy patients
based on the helper therapy principle, which described the
benefits that come from helping another person. The purpose

Of the research was tO examine whether persons who function

84

in a visiting role, demonstrate a greater level of
acceptance Of their own ostomy than persons enrolled in the
same group, United Ostomy Association(UOA), who do not
participate in the visiting role. The relationship between
a persons's acceptance and other study variables were also
examined. These variables include: age, sex, type Of
ostomy, length of time since. ostomy surgery, education,
period of time in the visitor role and the average number of
persons visited each year. .

Acceptance Of ostomy was operationalized as the
subjects score on the Acceptance Of Disability Scale
Modified(ADM). The population was composed of UOA members
who attended monthly group meetings and volunteered to fill
out the ADM. The total sample consisted of 318 respondents,
54% visitors and 46% nonvisitors. The study sample was
comprised Of predominately persons over' 50 years of age,
with 44% female and 55% male. More than half the
respondents had their ostomy surgery less than four years
ago.

Chi Square analysis of visitor and nonvisitor members
indicated that the visitors had a higher level Of education
(p<.05) and had experienced their surgery a greater length
Of time in the past (p<.001) than nonvisitors. Visitors
showed a significantly greater level Of acceptance Of their
ostomy than nonvisitors. A significant relationship (r a

.27, p<.006) was demonstrated between the persons ADM score

85

and the length of time in the visitor role. Using multiple
regression analysis the factors age, sex,type Of ostomy, and
length Of time since first surgery did not contribute
significantly to the linear equation. The length Of time a
person had his ostomy was a significant predictor of serving
in the visitor role; age, sex type of ostomy were not. The
longer the person served in the visitor role, the more
likely increased acceptance Of the ostomy was reflected on
the ADM.

Abrahams conducted a small descriptive study
identifying differences in volunteer widows helping styles
and rewards Of participation (1976). An analysis Of varying
inputs and rewards Of the helping process was used for four
different caregiving styles. The study was conducted
through a widow service line, a telephone mode Of service
delivery, staffed by volunteer widows. The service received
approximately 150 calls per month.

Descriptive characteristics of the volunteers were
reported. Mbst volunteers had full time jobs and families
to care for. Most Of the volunteers had no more than a high
school education and were between 40-50 years Old. Criteria
for participation included the widow being sufficiently over
his/her own grief, sensitive tO others, perceptive and
committed to the program.

Four’ distinct styles Of helping styles 'were

identified. These include: 1) informative-supportive, non-

86
self revealing; 2) emotive-supportive, non-self revealing;
3) emotive-supportive, some self revealing: 4) integrative-
friendship, self revealing. In order to further clarify the
four helping styles, Abraham described the style and the
helper's inputs and satisfactions for each style.

Volunteers in the informative-supportive style were
busy active people who are not looking for friends among the
other widows. They were usually involved in many volunteer
activities and other social organizations. They needed to
feel needed in helping others. The rewards they appeared to
receive were an enjoyment Of problem solving with new
widows. These widows did not perceive helping as a means of
their own growth. Their helping style was characterized by
a focus on information and activities.

Emotive-supportive, non-self revealing volunteers
were characterized as warm, outgoing people whose
personalities attract others. These volunteers feel they
were helped by others and want to repay the debt to other
widowed persons. They seemed to approach life from. a
spiritual perspective as a process of giving and receiving.
They were not looking for emotional involvement with others
and their main reward was their Own growth and development.
Their style Of helping focused more towards feelings than
activities, but they had no need to unload their own
feelings.

Type three, emotive-support, self-revealing

87

volunteers had not participated in formal helping activities
before joining the program. Most of them were helped by
another widow at the time Of bereavement. They had found
that their usual sources Of support, family and friends,
were unable to help them. Participating in the program
helped them expand social contacts and made them feel valued
by persons outside the family. They still needed to talk
about feelings and this was incorporated into their helping
style. The rewards for these helpers are the mutual sharing
that occurs, an increased understanding of their own
development, increased self confidence and a more positive
image from feeling appreciated. In sharing their
experiences with new widows they worked through their own
feelings.

Type four, integrative friendship, are usually not
involved in other helping roles, and are more isolated from
kin. They are recruited into the program. by friends
motivated to join by loneliness. They sought the helping
role to fill up time and take their minds Off their own
troubles. The rewards for these persons were extensive in
terms Of their own development 'toward. reintegration. and
adjustment. Feeling needed and appreciated by others
increased their self confidence.

The resources gained from participation in the helper
role are different for each level Of volunteers,depending on

the volunteers own needs and current resources. Volunteers

88
entered the program at any level, and Often changed their
helping style as they gained experience in the role. This
was a small descriptive study Of helpers, which the
investigator viewed as an initial step in beginning to
understand the characteristics of those who choose helping
roles.

A study of bereaved parents was conducted by
Videka(1979) . Member and non members Of a self help group,
Compassionate Friends were compared for trends in changes in
depression and personal growth, and levels Of involvement in
the program. Compassionate Friends(C.F.) is a group
therapeutic intervention for bereaved parents. The
intervention includes primarily monthly meetings that
consists of a speaker and an Open discussion for parents.

Two constructs were used to measure effects Of
participation. Levels Of depression were used as an
indicator Of progression through the grief process.
Personal changes were defined as an alteration in one's
sense Of self in which individuals see themselves as moving
towards their ego ideals, as a result Of mastery of the
crisis Of loss. The research question was: is increased
involvement in compassionate friends associated with
patterns Of change in levels Of depression, or in assessment
of personal change after the death Of a child? A list of
members and nonmembers of parents from eighteen chapter of

C.F. whose child had died less than eighteen months, were

89
Obtained. Two thousand, four hundred twenty-two
questionnaires were sent, 2.5% undeliverable, and 28% Of
those persons who received . the questionnaire agreed to
participate. Approximately one year after the first survey
was completed, a repeat questionnaire was mailed.

Level Of involvement was operationalized as the
number Of meetings attended, whether the parent considers
self a member Of the group, and formal roles taken in the
group. For analysis purposes, levels of involvement was
then categorized in low, high, and moderate levels. An Open
ended question was used to assess aspects Of personal
change. These responses were coded as positive, both
positive and negative, no change, only negative change, and
no answer at all.

Data analysis indicated they study sample to be 70%
women, mean age 41.2, a range of 21-67 years, 88% married at
the time of initial survey, middle-upper middle class, and
41% homemakers. Out of the employed women, 39% held
professional or managerial positions. Univariate analysis
indicated significant change in parent's growth scores.
Involvement in compassionate friends did not change
depression. Multivariate analysis, testing change across
membership levels indicated psychological adjustment to be
linearly related tO levels of involvement at p<.05 level.

This study added to what is know about the

characteristics Of persons who participate in a self help

90

group. Most participants were women, married and middle to
middle upper class. Although participating in a group
support program such as this is different from the
individual volunteer support role, both share the important
aspect Of mutual support. Thus the description of the
relationship between level of involvement and perceived
change would support the assumptions of this study that
additional resources may become available by participating
in such activities.

Bond et a1. (1979) published a descriptive article of
the Mended Hearts study that discussed specifically the
programs or Visit program. Visitors rated Mended Hearts
program more highly than nonvisitor members on relevance,
enjoyment and helpfulness. Forty-six per cent Of the
visitors reported talking to other members at least weekly,
only nine percent Of nonvisitors reported such contact.
Field Observations and interviews supported the notion that
visitors derived satisfaction from their role. One visitor
described the "sense of communion" felt with the hundreds Of
heart patients he has talked with over the years as a
visitor. Another described the "energizing" effect Of
visitation, even following a hard days work. Retiree
visitors Often indicated that it gives them something to do
with their time. The status and importance of their role in
the hospital environment was also perceived as a benefit.

Non-visiting members Of the- mended Hearts group perceived

91
minimal benefits Of group membership and maintain a
peripheral involvement in the organization.

A Canadian study was conducted to determine how
participants Of self-help groups perceived the benefits Of
their participation and their level Of involvement in the
program(Levy,1979). The investigators distinguished between
three kinds Of groups for this survey study. They included
l)loss-transition groups(L-T). 2) one-step removed from the
problem(OSR) and 3) those for' stress, coping' and
support(SC&S). The sample was derived from eighteen self
groups who were willing to have a representative distribute
the questionnaire. One-hundred and nine questionnaires were
returned out Of 175 distributed. A final sample of 87
persons were left after excluding those with limited contact
with the group or a type Of group that did not fit with the
investigator's categorization.

Of interest in this study is the data analysis of the
perceived benefits Of participation and level Of
involvement. Nine elements Of self help group support were
identified from the literature. Three global measures Of
overall benefit, behavior change and attitude change were
also measured. On a seven point Likert-type scale where 1 a
least, 7 = most benefit, the mean overall benefit score was
6.3. Members Of the OSR group provided the highest ratings
of benefit on seven Of the twelve measures. The L-T group

had the lowest ratings on the 12 measures. This sample

92
supported nine benefits selected from the literature. These
nine elements include benefits from helping others, help
from others, coping strategies, sense of community, coping
with public attitudes, factual information, spirit Of hope,
and self confidence. Eighty-eight percent Of the sample
responded positively to the nine elements of support.

An analysis Of the characteristics Of members'
involvement indicated the mean length of group membership
was 39 months, with a range from 3 to 237 months. At least
83% had monthly attendance at group meeting, with 53% weekly
or biweekly contact. More than one-third of the members Of
each type Of group in this study maintained either daily.
contact or numerous weekly extra group contacts with co-
members. The investigator's acknowledge that the sample is
biased in favor Of those members who volunteered to complete
the questionnaire and were active group members.

As part Of this study, a descriptive field study Of
several kinds of self help groups was conducted. A survey
Of eighty members Of nine self-help groups that were either
behavioral control group(AA, Parents Anonymous) or stress
coping groups(Parents without Partners, Make Today Count)
was undertaken in order to describe the characteristics of
participants and their views Of self help groups. The
survey questions were developed from reading the literature
and a period Of nonparticipant Observation Of several

groups. Of interest in this study is the description Of

93

demographic characteristics and responses tO items that
dealt with how participants were helped by their group. The
mean age of respondents was forty years, ranging from 16-67
years. There were fewer married persons in the stress
coping group, although this difference disappears if the
Parents without Partners, whose membership requires single
status, is not included.

The researcher's were careful to point out the
problem Of sampling bias. The members Of such groups are
voluntary and are self— defined sufferers Of the problem.
Since no records are kept by the group, it is not known what
proportion Of the total population Of individuals with a
particular problem are represented by current membership.
The respondents are from four cities in the midwest and
south. A.return rate of 67% for both kinds of groups was
reported.

When group members were asked how they had been
helped by their group, forty one jpercent Of the group
members indicated that the group had provided social
involvement or fellowship. Twenty one percent Of the
behavior control group members indicated that the group had
helped them in reaching goals. Helping to understand and
accept their own. problem (11%) and. facilitated. personal
growth (8%) were also identified as benefits to group
participation. When participants were asked to further

describe why their group was effective, the following

94

findings were named: supportive accepting environment (83%)
greater understanding Of themselves and own problems( 33%)
and learned that it was possible to reach goals (10%-in
behavior control group only). Asked to respond to Open-
ended questions on benefits, one-half Of the respondents
described specific benefits. Forty percent of the
respondents identified encouragement, and 23% said
acceptance and social contact were benefits.

One last program descriptive article will be
reviewed, although not a research study, because it includes
transcripts of NICU volunteer support parents discussing
their role. Livermore described volunteer parents who
participate in one particular support program, and who do
not receive any preparation for the role. The volunteer
parents meet as a group every six weeks to exchange
experiences and give each other support. The meetings also
serve the function Of providing new information and meeting
with the NICU staff. The central purpose of the NICU
program is person-to-person exchange. Of interest in this
article, were parent statements that. apply' to 'volunteer
resources and demands. These statements include:

"(about visiting new parents) I always felt
tremendous amount of anxiety. .I guess that is

a
a

personal quirk Of mine. . . the visits would be fine,

but them I would think about them a lot afterward.

I

would wonder if I had said the right things and been as

effective as I might have been"

"Making that call to the mother was always a problem.
I'd have to "rev" myself up"

95

" when I go into a hospital and get ready to knock on a
new mother's door, there is always that twinge: am I
intruding on this person, what if this person doesn't
want any help, what if they don't want to hear what
I've got to say..people don't always respond the same.
. they are not always really crazy to hear from us"

" a benefit Of belonging to the visiting parents group
for me was that it gave me a way to work out the
feeling Of isolation that I had in the hospital. .I
think it has also given me a way to work out some of
the fears and some Of the angers that I had about the
hospital situation"

(Livermore,l980,p.183)

It is difficult to interpret these comments without
information about the support parents. However, these
comments indicate that the support role does provide
additional resources and demands for volunteer parents. -

Although studies Of helper therapy and self help groups
do indicate potential rewards from participation, no
assessment Of the effects of the increased demands on the
individual or family is reported. Many Of the studies do
not include data collection when the volunteer begins the
program. This prohibits comparison Of data at a period Of
time following the implementation Of the support role. Most
of the studies reporting program benefits rely on self
report data from the volunteer. This limited review does

indicate potential areas for assessing resource effects Of

NICU support program participation for volunteers.

96
Stunning

In summary, a review of the literature would indicate
support for the assumption that volunteer NICU parents may
be vulnerable to additional parenting and other family
demands because of their experience in the NICU. Most Of
the studies reviewed are not conceptualized broadly enough
to be able to study the relationships between the parents
and their environments. Thus parenting behavior is examined
in a narrow context. The parents response to the stressors
Of the NICU and the grief response are not 'viewed as
processes that change over an extended period Of time and
that are related to the parenting function. Thus, a very
fragmented picture emerges from the current literature Of
characteristics Of families whose children have been
hospitalized in the NICU.

Characteristics Of volunteer helpers appear to vary
related to different health problems. Although studies do
indicate some limited support for benefits of the helping
role, no studies have conceptualized effects Of
participation from a broad perspective including additional
demands Of assuming such a role. Self report data from
volunteers is used _tO assess .benefits Of’ jprogram
participation. There is no study that the author is aware
Of that documents the characteristics Of NICU volunteer
parents and effects Of participation.

Future research is needed to explore the multivariables

97
that impact on the family with the birth Of a preterm
infant. A longitudinal approach to assessing the impact Of
this experience is recommended. A description Of those NICU
parents who volunteer for an NICU support role and the
health status Of their family unit at the time Of
participation would be useful. Then a support intervention
that will protect and perhaps enhance the well being Of
those parents who volunteer for' a support role can. be

accomplished.

CHAPTER IV
METHODOLOGY

Overv ew

The purpose Of this chapter is tO describe the
methodology that was used to conduct an exploratory,
descriptive study of NICU volunteer support parents. A
survey methodology design was chosen to answer the research
questions. A mailed questionnaire was utilized to collect
data. A nonprobability convenience sample of all NICU
volunteer parents who participated in the initial
demonstration program entitled NICU Perinatal Positive
Parenting at the Butterworth Hospital in Grand Rapids,
Michigan was surveyed. In this chapter, study variables are
operationally defined and data collection and analysis

procedures presented.

Study Design
This study Of NICU volunteer support parents was

conducted using survey methodology. Survey methodology can
be appropriately utilized as a "search" device when the
researcher is only beginning inquiry into a particular
topic(Babbie, 1973). Because so little is known about

volunteer parents, an exploratory study using survey

98

99
methodology, enables the identification Of important
variables and raises new issues that can them be followed up
in a more controlled manner in a later study. A descriptive
surVey study is useful for the purpose of providing an
accurate portrayal Of a population that has been targeted
because Of some specific characteristics (Wilson, 1985). It
is difficult to gain access to a group Of volunteer support
parents that have not been selected or screened by
professionals involved in the program and who have all been
exposed to similar training and professional contact. By
using the NICU Perinatal Positive Parenting demonstration
program, as a select population of support parents,
information was available on the program characteristics.
This study' was conducted. as part of a larger research
project entitled "Demonstration Of a Perinatal Positive
Parenting Program in an NICU setting" that is being
conducted at the Butterworth Hospital in collaboration with
the Institute for Family and Child Study, Michigan State

University.

Operntionaligation Of Study Variables
For’ the ‘purposes of this study, three ‘major study

variables were defined. These variables include: (1)
background characteristics, (2) level Of involvement in
program activities and (3) effects Of participation in the

support program. For each Of the three major variables, a

100
group of subvariables were also defined.

Bnckgrgnnd chapactenistign were defined in this study
as those distinguishing traits, qualities or properties that
may' help to differentiate those persons in the study from
other persons in the general population (Babbie, 1972). An
assumption was made for this study, that the individual
parent volunteer's participation and the effects of
participation are embedded in the parent's own NICU
experience and in the broader context of the parent's
current family situation. Therefore, background
characteristics that describe the parent volunteer and
family at the time of their own NICU event, at the time of
their entry into the program, and at the time of data
collection were chosen to reflect this conceptual notion.

For the purposes of this study, three types of
background characteristics were chosen and defined,
including: (1) demographic, at the time of program entry,
(2) current family-related. and. (3) NICU' historical

characteristics.

l)pemog;aphic charactenistics were operationally

defined as: age, sex, race, marital status, employment
status, education, and income.

2)Family reiaped cnanactenispics were operationally

defined as: family composition, mother's perception of
current health problems of the NICU-involved child that
she believes are related to the NICU experience,
mother's worry about biopsychosocial concerns related
to the NICU child, mother's worry about NICU child's
development, and other family stressors that have
occurred during the period of program participation.

3)

NI

101

Family composition was defined as the age and
sex of those family members who are related
to the volunteer parent including their
spouse or as a natural born or adopted child.

Current health problems of the NICU involved
child were defined as the mother's perception
that the child presently has specific
physical health problems that she feels are
related to the child's NICU experience and
her description of such problems. Mothers
were asked to list specific health problems
of their NICU-involved child versus a general
assessment of their child's health or lack of
health.

Biopsychosocial concerns about the NICU child
were operationalized as the mother's
perception of whether or not she worries
about the following concerns: hyperactive
behavior, shyness, difficulty with
discipline, school related. difficulties,
dependence on parents, lag' in. development
from other children of the same age, and
tendency to be sick more often than other
children.

Worry about development was defined as the
mother's response to a statement of worry
about whether the NICU child will be "all
right" on a five point Likert-type scale from
"not at all " to "a great deal".

Family stressors were defined as stressors
that the mother indicates have occurred to
their family since participation in the
support program, including: loss of job,
change of job, moving, beginning school,
finishing school, death of a significant
person, illness of a significant person,
problems with parents or any other as listed
by the mother.

istorical character'st s were

operationalized as resources and demands of the
mother volunteer's own NICU experience. Demands
and resources of the NICU experience that were
measured include:

102

a . pregnancy history: fertility problems ,
miscarriage, infant death, infants needing
NICU care, pregnancy related complications.

b. infant transport: infant born in a hospital
that does not have an NICU, and transported
to a regional NICU for care.

c. infant characteristics (in NICU): sex,
weight, year of birth, reason for admission,
number of days hospitalized, life threatening
status.

d. infant. characteristics (post. discharge):
mother's perception of infant caretaking
during the first three months at home(
measured on a Likert-type scale from one -
hard to seven - easy), and identified health
problems at discharge.

e. parent access to other NICU parents: access
to other NICU parents whose infants were in
NICU, access to an NICU support parent from a
specific program, type of support contact.

Levei of Involvement in progpan activities was defined
as the estimated time that parent's report that they spent

in program training and support/supervision group meetings
and in direct support activities with assigned NICU
families.

Lauren—training and suo sue s
antivities were defined as the group training and

monthly volunteer sessions of the NICU/ Perinatal
Positive Parenting Program that were offered to
parent volunteers.

 

103

2. pipect snpport activities witn NICU families were
defined as those activities that the parent

volunteer engaged in that were directed towards
the needs of a particular NICU family. Specific
NICU support activities that were included in
calculation of the total time were home visits,
hospital visits, phone calls, gromp meetings in
the home and contact with the nurse coordinator.

Perceived effects of participation were defined as
changes in specific cognitive, affective, or behavioral
resources or demands that the volunteer parent indicated had
been influenced by their participation in the support
program. The parents' perception of effects were assessed
using a five point Likert-type scale with responses
including: not at all, minimally, a good deal, a great deal.

The specific effects of participation in the program
were determined by choosing specific resources and demands
of helping relationships identified in the literature, and
those that volunteer parents indicated to the investigator
as part of the larger research study. Using the ecological
model, human resources and demands were identified as time,
energy and human capacities. Human capacities were defined
as affective, cognitive and behavioral capacities.
Affective capacities were those capacities that relate to,
arise from or influencing feelings or emotions. Cognitive
capacities were those capacities that relate to the process
of knowing, including both awareness and judgement.
Behavioral capacities were those capacities that relate to
the manner of conducting oneself. Psychological energy was

not directly assessed in this study, and was viewed as a

104
component of affective capacities“ Physical energy 'was
viewed as a behavioral capacity. Time was defined as hours

and minutes spent in specific activities.

Insppnnent Devaiopmenp

Investigator developed instruments were used in this
study, with the exception of the demographic questionnaire
that was utilized for all parents as part of the research
evaluation of the NICU support program. Three instruments
were developed in order to address the research concerns:
(1) NICU and family related background characteristics, (2)
level of involvement in program activities, and (3) effects
of program participation. Questionnaires were developed to
assess background characteristics and level of involvement
in program activities. A Likert-type scale was developed to
assess effects of program participation.

Content for the instruments was determined by : (1)
information about NICU parents and volunteer support persons
identified in the review of literature: (2) the
investigator's clinical experience working with volunteer
parents: (3) the volunteer' parents response on written
documents that were completed during the preparation
program: and (4) the conceptualization of resources and
demands that were presented in the conceptual framework of

the study. The study instruments were developed using the

105
following four stages of design as described by Sheatsley
(1983). These include 1) specification of the information
required: 2) construction of items to elicit that content:
3) ‘ ordering and formatting of items into a draft
questionnaire: and 4) testing the instrument on a pre-test
sample and making the necessary revisions. Most of the
background and level of involvement questionnaire items were
constructed using closed ended items, either using Idkert-
type scales, or choosing from among listed alternatives.
Items for the effects of participation questionnaire
included closed and open-ended items and Likert-type scales.
A description of the content of the study instruments

follows.

Back round est on a e: Curre t

Family-Ralated and NICU Historical Chapacpepistics

A background questionnaire was developed in order to
elicit descriptive information about the NICU experience and
the current family context of the volunteer support parent.

For consistency purposes, a decision was made to have
onIy mother volunteers provide this information, since not
all volunteer parents participated as couples in the
program. Thus, this descriptive information can only be
viewed as mother volunteer perceptions of the NICU event and
current family situation.

Description of the family membership by age and sex

was used to assess the family composition. The number of

106

adults and children provided information on the family's
demands for economic and nurturing functions. Since NICU
children are more vulnerable to health and developmental
impairments, the identification of health problems was also
used as an indicator of demands on the family's resources.
Because of the risk that is described in the literature for
bio-psycho-social difficulties in INICU-involved children,
this characteristic was also included. Length of time since
the NICU experience was used as an indicator as to when
parents felt ready to assume a support role.

The NICU content of the background characteristics
questionnaire reflected the demands and resources of the
family's own NICU experience. This information was used to
identify if there were any specific characteristics of those
parents who volunteer that relate to their NICU experience.
Oftentimes, mothers who deliver children requiring NICU care
have had difficult pregnancy histories. They may have had
previous NICU experience with children who have not
survived, or frequent miscarriages or other pregnancy
complications. Mothers with such histories have been
reported to be more at risk for having children who display
characteristics of the vulnerable child syndrome. Families
whose children are transported from outside the hospital and
local area have increased demands including maternal
separation, increased travel time and money.

Characteristics of the baby and their NICU experience also

107
give some indication of the demands that were placed on
parents. Smaller babies and those with life threatening
health problems usually spend a longer time in the NICU.
The' psychological demands on a parent whose baby's life is
in jeopardy are also increased.

Of interest in. this study, ‘was the jparent's own
experience with experienced parent or volunteer parent
support during their own NICU hospitalization. Did parents
who were well supported by another parent return to
volunteer(high support resources), or did parents who wish
they had a support parent want to assume the role(low
support resources)? InfOrmation on discharge and caretaking
at home were also measured to assess demands on the family.
All of the NICU historical items were assessed in order to
identify any patterns of characteristics in the volunteer
group that relate to resources and demands during the NICU

period of time.

v v e t e
Level of involvement was assessed by estimating the
amount of time that parents spent in program related
activities. Two kinds of program related activities were
differentiated. One category of program activities included
those activities that involved the support parent in either
direct work or indirect work to meet the needs of a specific

NICU family. Such activities included hospital visits, home

108

visits, phone calls, group meetings, and contact with the
program coordinator about an individual family. Another
category of program activities included those activities
associated with preparation and supervision/support of the
volunteer parents in peer group settings. These activities
included the training program sessions and the monthly group
supervision and support meetings.

This particular group of volunteer parents began
preparation for the support role at the same point in time
and were offered the same number of training sessions and
support/supervision group sessions. Support and supervision
sessions are monthly meetings held by the nurse program
coordinator for the NICU volunteer parents. Time is
allocated for parents to talk about their specific concerns
in relationship to the families that they are currently
serving. Presentation of information is sometimes planned
on particular topics of interest to parents. Parent
volunteers were asked to indicate from a listing of the
sessions, the number of sessions attended. The amount of
time spent in program activities was computed from the
reports of the number of sessions subject attended.

Level of involvement was assessed by documenting the
amount of time in activities from program records. The
volunteer parents were asked to validate or correct program
records to give the best estimate of time. Total time in

each category of were calculated. The number of families

109
served by each volunteer was also assessed in order to aid

in the analysis of time involvement.

ngepts of Pagpicipapion Scaie

A Likert-type scale was developed to measure the
parent volunteer's perceived effects of participation. The
content for the effects of participation items were drawn
from reported effects cited in the self help and helper
therapy literature, and from the investigator's clinical
experience with volunteer parents. Self help groups were
defined as human service oriented, voluntary association
made up of persons who share a common problem and who work
together to resolve the problem through mutual aid(Borkman,
1976) . Although the volunteer parent group did not fit
precisely into the category of self-help, they chose to
participate in a program with the understanding that they
wOuld spend approximately twenty four hours in group
sessions with other NICU parents. The purpose of these
groups was to enable the parents to better understand their
own and other families NICU experiences and learn support
and parenting skills specific to the new role. These
sessions included experiential exercises and sharing with
other parents. The parents also met once a month with each
other for grOup support I and supervision with. the nurse
coordinator. Because of the amount of time spent with other

volunteer parents in this particular program, it was felt

110
that reported effects of self help groups would be important
to survey with the parent volunteers.

The concept of helper therapy appeared to fit even
closer to the role of the NICU volunteer support parent.
Reismann coined the phrase "helper therapy" in order to
describe what he felt were the benefits of helping other
people(1965). It would seem that if volunteer helpers can
benefit from participation as a helper in a relationship,
that likewise participation may also make demands or cause
increased stress for the volunteer. For the purpose of
identifying effects of participation, both benefits or
resources and costs or demands of the role were assessed.

From an ecological perspective, the effects of
participation would not be limited to the individual
volunteer only. If there were changes that occur in the
volunteer parent related to their participation, it was
proposed that these changes would also affect other family
members and the family's overall functioning. Therefore,
effects were written to reflect a family perspective, that
is volunteer effects in relationship to other family members
or the family as a whole. However, this instrument should
not be interpreted to be measure of family effects, but only
individual perceptions of family effects.

Potential effects as identified in the literature or
identified by the investigator are listed in Figure 7 with

the corresponding number of the scale item. There is

lll
limited information in the literature on any demands of the
support role, and many of these items were generated from
contact with volunteer parents. Resources were more easily
identified from the helper therapy literature and outcomes
of the self-help processes. The categories were used for
classification. of items only, thus there are an 'uneven

number of items in each category.

112

 

 

R t e Vo e S . e
Cognitive

* ways to cope with my own problems(#l)
* valuable personal information, especially in the area of
parenting NICU children and family relationships(#15)

Affective

improved self image, better about self as a person(#2)
sense of involvement in worthwhile work(#l7)

emotional support from other volunteer parents(#16)
chance to work through feelings about own NICU
experience(#7) "
feelings of equality in giving and getting(#9)

feeling "energized" by helping(#8)

* emotional support from program nurse for own
familY(#21)

iii-8-

a-s

Behavior

increase abilities to communicate with others(#6)
abilities to find family resources(#4)

confidence in parenting abilities(#12)

valuable work experience for career or job goals(#10)

*I'I-I-

ds t

Affective

reliving own painful memories(#18)

worry about own family problems(#3)

stress in relationship with spouse(#18)

being with hurting parents is emotionally draining(#5)
feelings of inadequacy that helping isn't making
things better(#11)

*fl-I'I'fl'

Behavioral

* fatigue, less energy(#l4)
* stressed in responding to own family's needs(#13)
* financial strain from expenses of volunteering(#20)

Figure 7 : Summary of Specific Potential Effects of
Volunteer Participation.

 

 

113

Open-ended questions were also used to uncover parent-
identified effects that were unknown or not selected by the
researcher. Open-ended items included:

1. Are there ways that you feel your participation
in the program has made things BETTER for you or
for your family.

2. Are there ways that you feel your participation
in the program has made things MORE DIFFICULT for
you or for your family.

One global effects item was written to assess the

parent's perception of the overall ratio of the demands and
resources of participation. Parents were asked whether

program resources and demands were equal or whether one was

more or less about the other.

e b 't and Validit
of Perceived Effects Scale

Reliability is defined as the degree of consistency
with. which the instrument. measures the attribute it is
supposed to measure (Polit and Hungler, 1979) . Although
each item on the participation effects questionnaire was
reported individually for descriptive purposes, a
preliminary analysis of its reliability as a scale was also
done. Reliability can be established by using a variety of
methods. Internal consistency reliability can be tested by
comparing part of the instrument with one another. The
alpha coefficient is the preferred index of internal
consistency because it has a single value for any given set

of data: and it is equal in value to the mean of the

114

distribution of all possible split-half coefficients
associated with a particular set of data. Alpha co-
efficient measures the extent to which performance on any
one. item on an instrument is a good indicator of the
respondent's performance on any other time in the same
instrument(Waltz,1984) . The steps that were followed for
testing the scale included: (1) coefficient alpha was
computed on the total scale items and on the subscales of
resource and demand items ; (2) individual items for the
total scale and each subscale were examined to determine if
the scale alpha could be improved by the deletion of items:
( 3) interscale correlations were done to determine if the
subscales were measuring distinct or similar concepts: (4)
if items did correlate on the total scale or either
subscale, interitem correlations were examined.

Validity refers to whether the instrument really
measures what it intends to measure. Logical or sampling
validity is the extent that the items in a test adequately
represents the content of the topic or construct covered in
the rest of the test (Wilson, 1985). Logical or sampling
validity was utilized in evaluating the adequacy of the
questionnaire items representing the content of the topic
and the conceptual model of the study (Wilson, 1985). In
order to use this method, categories of resources and
demands of the support role were identified in the

literature. Experts were asked to evaluate the extent to

115
which the items selected covered these categories, as well
as theoretical aspects. At least one published expert in
the field of NICU' parent support and two local nurses
invOlved in parent support were asked to evaluate the-
congruence between the conceptual model and Vthe
questionnaire, including whether all aspects had been

covered adequately.

§coring

The items on the effects of participation scale were
scored in the following manner. There were twelve items
depicting potential effects of participation that may
enhance the volunteers resources and eight items that depict
potential demands. These twenty items were scored using a
Likert-type scale, with 'the highest score given a "5",
indicating that the parent perceives the program to have
affected the behavior, feeling, knowledge "to a great
degree". If the parent perceived no effect, the lowest
score given a "1" would indicated the response "not at all".

All of the respondents' open-ended questions were
reviewed, If the open-ended responses ‘were further
elaborations or repetitions of the items on the scale, the
number of such responses were tabulated for each item. If
new categories were identified, the number of parents
indicating the response for the new category will also be

figured.

116
Pre-pest of the Questionnaire

The questionnaire was pretested with two parents, from
different families, who Ihave functioned. in the role of
support parents in the NICU. The method of pretesting was
by self administered questionnaire. This was consistent with
the method that will be employed for the study. Each parent
was asked to discuss the questionnaire after it was returned
to the researcher. Parents were asked about clarity and
appropriateness of content and language. At least one of
the parents was interviewed in person about the

questionnaire.

SETTING

The study was conducted through the regional neonatal
intensive care unit in a community hospital setting. The
NICU is a fOrty bed unit, serving a three county urban and
rural population. In 1985, 570 infants were admitted to the
unit. Of this number, 252 infants were transported to the
NICU from outlying hospitals. Almost 200 of these infants
were born in the out county areas.

This hospital has had a reputation for being involved
in parent support programming efforts since the units
inception almost nine years ago. The NICU was recommended
by State Health Department consultants as an ideal facility
to demonstrate and evaluate the effectiveness of a

comprehensive parent-to-parent support program, because of

117

the philosophical beliefs of the health care providers.

SAMP

A convenience sample of 28 NICU support parents were
recruited for this study from the group of NICU parents who
had volunteered for the initial demonstration of an NICU
Perinatal Positive Parenting Program at Butterworth
Hospital, Grand Rapids, Michigan. Former NICU parents were
not chosen by hospital staff for the support role in this
particular program. Thus a short description of how parents
came to be involved in the program. was necessary for
interpreting the study findings. All parents whose infants
had been discharged from the Butterworth NICU were sent
letters that explained the demonstration program, and the
hospital's desire to expand the current visiting parents
program. One group of parents were not included in this
invitation to participate in the demonstration program. The
hospital had an existing NICU parent support program, called
Visiting Parents, which consisted of approximately ten
volunteer parents who telephoned NICU parents that had
requested a support call. The parents in the original
visiting parents group were not recruited for this role.
The Visiting Parents program served about 10 families in the
year prior to the initiation of the demonstration program.
Volunteers that were still active in the Visiting Parents

service were asked to maintain that role for the duration of

118
the demonstration project, because specific research
criteria would limit the participation of all NICU parents
in the demonstration support program.

The twenty-eight parents in the demonstration program
were selected for program participation in the following
manner. An informational letter about the demonstration
project was sent to parents that described the project that
indicated that as part of the demonstration project a
minimum of twenty four hours of support parent preparation
and training would be included. Parents were asked to
indicate their interest in the role, and positive responses
would be followed up by a contact from the nurse
coordinator. Out of approximately 450 letters sent, 90 were
undeliverable,and approximately 90 were returned indicating
parent interest in the support program. These 90 families
were sent a volunteer profile form in order to collect
further information about the infant's health status and
parenting experiences of the family. Parents were also
asked about potential availability for a training program
that would begin in November of 1984, meeting primarily in
the evening hours. Parents who indicated that they were
coping with severely handicapped children in the home were
asked to either wait until the demonstration preparation
program was completed or invited to participate in the
ongoing visiting parents group. This was done because the

program guidelines direct the matching of parents by NICU

119

experience, and the criteria for inclusion of NICU study
families included infants with no major anomalies,or known
genetic defects. Only one family who had experienced an
infant death volunteered. One set of parents who
experienced infant death and one set of parents whose child
had cerebral palsy with motor involvement were included
since it was likely that some of the program families may
experience this outcome with their NICU children.

Because of the time constraints of the training
program, other family commitments, or by the parents own
decision to not participate, this group of parents was
limited to 28 parents. The 28 parents who could participate
in the training sessions were all interviewed by the
Butterworth nurse coordinator or by the researcher. No
parents were screened out of the preparation program at this
time. If the parent or the nurse felt the direct support
role was not appropriate for the parent at the end of the
training period, there were other program role functions
available for parents. All 28 of the parents indicated a
desire to adopt the direct support role at the conclusion of
the training. A few parents were hesitant and wanted the
opportunity to try the role and further evaluate if this was
an appropriate and comfortable role for them.

In summary, volunteer parents were not screened,
selected or omitted from the program using professionally

determined criteria regarding parent suitability for the

120

role. Those parents with severely handicapped children, or
those parents currently working in the Visiting Parents
group were omitted because of the infant criteria used in
the demonstration program. It appears that the composition
of the group was determined primarily by the demands of the
preparation program, the particular timing of this
preparation period, and other family needs at this time. It
should be acknowledged that if any of the former’ NICU
families had moved and mail was not forwarded, these parents
were not included because of the inability to initially
contaCt or maintain contact with the parents. Of the 28
parents in the support parent group, 19 are female and 9 are
male. All of the spouses of the male volunteers participate
as a support parent, 10 of’ the female ‘volunteers have
spouses who do not participate in'the program.

The use of a nonprobability sample limits the
generalizability of the study results to only those'
volunteer parents that share similar characteristics of this
sample and participate in a similar volunteer program. This
particular volunteer support program may not be
representative of amount of involvement as most parent
support programs. It has an intensive preparation period
that focuses on using the parent's own experiences to learn

the support role. Additionally, volunteers in this program

121
may have more contact with the professional nurse
coordinator than may be available to volunteer parents in

other programs.

Da Co ect on o edu es

All volunteer parents who were in the initial PPP/NICU
Perinatal Positive Parenting demonstration program at
Butterworth hospital were asked to participate in this
study. A letter was sent to the volunteer parents prior to
their monthly volunteer group meeting. The letter described
this project, previous consent forms which they signed as
part of the larger study, their option of continued
participation or withdrawal, and the content of the study
instruments. The parents were advised that a period of time
had been set aside at the next parent group meeting to fill
out the questionnaires. Parents could choose to fill out
the questionnaires at that time, indicate that they do not
want to participate, or take the packet home to be
completed. If parents were not able to attend the monthly
meeting, they were mailed questionnaires and again had the
option to return the questionnaires completed or withdraw
from this aspect of the evaluation. Parents were asked not
to discuss any of the items with their spouse or other
volunteer parents until after the forms are returned to
theresearcher. If parents did not return the

questionnaires, a reminder postcard was mailed to them after

122
seven days, as this increases the likelihood of
returns(Babbie,1973) . Parents were asked to contact the
nurse program coordinator if they did not wish to
participate in this aspect of the evaluation, and then no
further reminders would be sent. All parents indicated that
they wished to participate. One reminder phone call was
made to parents who did not respond to the postcard. All 28
parent reported mailing the instruments. One couple's
materials were not received in the mail.
Data Analysis Plan

Univariate analysis of study variables was used in
order to describe the sample and questionnaire responses.
Continuous variables were analyzed using frequency
distributions, grouped data, percentages, averages(mean,
median, mode), range and standard deviation. Nominal or
limited ordinal variables were reported using the mode or
frequency distributions. Because 9 respondents are spouses
in the same family system, mothers and fathers, will
additionally be grouped and reported separately. Stratified
frequencies were used for description of mother volunteer's
level of involvement. Resource and demand items on the
perceived effects scale were reported individually by means,
std.dev. and percentages. Scores for the subscales were
reported by means, std.dev. , range, and variance. Data
analysis for each research question will be summarized in

Figure 8 .

123

 

 

Question 1, Background Information

Demographic Information

age ' means,percents,
sex frequencies
race

marital status
employment status
education

income

Family-related information

of family members range,percents
current health problems in

NICU children

of mothers who worry about

NICU children being okay

of mothers who worry about

specific behavior problems

of identified behavior problems

additional family stressor's

***=fl=*

NICU information

# of mothers who experience: percents
fertility problems, miscarriages,
number of miscarriages,infant deaths
children in the NICU

# of mothers reporting

pregnancy complications range,percents
# of infants identified by:
- sex percent
birth weight range,percents
hospitalized days range,percents
transported percent
maternal separation percent
reason for admission percent

of diagnoses

Figure 8 : Data Analysis Plan

 

 

124

 

 

life threatening illness

parent's access to other parents
parent's access to support parent
parent's use of support parent
type of contact with support parent

parent's ease of caretaking

Question 2 , Level of Involvement

total volunteer time all families
total volunteer time for
prep/supervision

total volunteer time for

all support activity

Question 3, effects of participation
each effect
open-ended effects

global effects measure

Figure 8 : Continued

percent
number,percent
number,percent
number,percent
type,number,
percent
scales: 1-7
means,range,
percent

means,range,%
(all)

means,percent
numbers in
categories,
frequencies,
percents

 

 

125

In January of 1985, volunteers were requested to
participate in a descriptive study of volunteer support
parents, as part of the larger demonstration evaluation
study. This study was approved by the University Human
Subjects Review and the hospital review committee. In
September of 1985, an expedited review process was
accomplished in order to add volunteer interviews and
observations of the support processes to the original study.
In August of 1986, it was necessary to submit for
continuation approval of the total project and this study
was included in the review process(see Appendix B).

In order to obtain university Human Subjects Review
approval, the following steps were indicated. A letter was
sent to the volunteer support parents, which reminded them
of their prior consent to participate in the research. The
letter indicated the confidential nature of the project and
briefly reviewed the contents of the original consent form.
Parents were informed that the questionnaires were available
at the monthly volunteer meeting. If they wanted to
continue to participate in the research, they were asked to
return the questionnaires by mail, or return blank
questionnaires if they did not wish to participate. The

Human Subjects committee chairperson received a copy of the

126
draft letter to parents, and the new questionnaires. This
project was included in the annual review of the NICU/PPP
project.
EEEEQIZ

In this chapter, the research methodology, a survey
design using an investigator developed questionnaire, was
described. Questionnaire development, operationalization of
variables, data collection procedures outlined and plans for
data analysis were presented. The next chapter will

describe the results of the data analysis.

CHAPTER V

DATA PRESENTATION AND ANALYSIS

Overview

In this chapter, the results of a descriptive study of
28 Neonatal Intensive Care Unit volunteer support parents
are presented. Survey instruments were used to assess the
volunteer parents' (1) background characteristics, (2) level
of involvement in program activities and (3) perceptions of
effects of their participation in a support parent program.
The results of the pretest of the instruments are reported.
A scaled instrument was developed to describe the perceived
effects of participation, conceptualized as program demands
and resources. The reliability analyses of the perceived
effects scale and subscales are presented. Study findings
for each of the research questions are described and

summarized.

127

128
Pretest of tha¥Studv Inatrunanpa

The Background Characteristics, Level of Involvement
and Effects of Participation instruments were pilot tested
prior to use in the study. Two mothers whose infants had
been hospitalized previously in the NICU and who had acted
in a support parent role were contacted to participate in
the pretesting of the instruments. Of the two mothers, one
mother's infant was hospitalized for a short period with
neonatal jaundice and septicemia, the other mother's infant
was diagnosed with congenital heart defects. One mother was
mailed the questionnaires and requested to give written
feedback on the clarity and the content of the
questionnaires. This mother was subsequently interviewed by
the researcher by telephone. The other mother filled out
the questionnaires in the presence of the researcher and was
interviewed extensively at that time. The results of the
pretesting supported the following changes (See Appendix C
for Study Instruments). An effects of participation item
that assesses family financial strain was added as item
number 20. An item indicating support from other volunteer
parents was reworded on the effects scale. An item that
describes mothers' concern about their children being "all
right" (item 19) was added to the NICU historical
questionnaire. Item 20 in that same questionnaire was
modified from a broad statement item on worry about NICU

child's behavior to the identification of specific

129
behavioral concerns (hyperactivity, dependency on parents,
shyness, discipline, school related, developmental lag,

frequent sickness).

Qnaationnaira Rapnpn

The sample consisted of 28 parents, 19 mothers and 9
fathers, who participated in a demonstration program of a
NICU Perinatal Positive Parenting program. Demographic data
on all 28 parents, collected at the time the parents began
the volunteer training program, was complete. Study
instruments for NICU and family background, level of
involvement and effects scales were distributed at the
conclusion of the volunteer parents' monthly meeting. Those
parents not in attendance were mailed the questionnaires.

Eighteen mothers and eight fathers returned the

questionnaires . One couple reported mail ing their
questionnaires, but they ‘were not received» .All
questionnaire items were not complete . Missing data for

specific items were not included in the statistical analyses
for that item. There was no pattern noted related to the
missing items,with the exception of the father's level of
involvement data and the global item on resources and
demands. Only two of eight fathers completed data sets on
level of involvement. Five parents did not answer the
global resources and demands item, which was the only

question on the last page of the effects questionnaire.

130
Study Resulpa

Question One: What are the background characteristics of

NICU support parents?

Demographic Characteristic

All volunteer NICU support parents were caucasian and
married. Volunteer mothers ranged in age from 23 to 38
years with a mean age of 30.8 years, standard deviation
3.86. Over one-half the mothers were over thirty years of
old. All of the volunteer mothers had completed 12 years of
school, with a median level of education of 12.5 years.
Five mothers (26%) had completed 16 years of education.
Three mothers reported that they are currently enrolled in
school (see Tables 1 and 2).

Volunteer fathers ranged in age from 26 to 43 years,
with a mean age of 30.8, standard deviation 5.35. Sixty-
seven percent of the fathers were between 23 and 30. Forty-
four percent of the volunteer fathers indicated that they
had completed 12 years of school only, and. 22 percent
completed 16 years (see Tables 1 and 2).

Yearly family income. of ‘volunteers' families ranged
from under $15,000 to over $35,000. Families where both
mother and father volunteered as a couple were in the $15-
25,000 income bracket, whereas in families where only the
mother participated as a volunteer, 40% of the families were

in the $35,000 and over bracket (see Table 3).

131

Table 1. Age Distribution of Volunteer Mothers (n - l9)
and Fathers (n a 9) ‘

 

 

 

Mothers- Fathers

Age n % n %
23-26 3 l6 2 22
27-30 5 26 4 45
31-34 9 47 2 22
35 and over 2 11 1 11
Total 19 100 9 100

 

 

 

 

Table 2. Educational Level of Volunteer Mothers (n =
and Fathers (n = 9)

Mothers Fathers

Years n % n %
12 9 48.0 4 44.5
13 1 5.0 1 11.1
14 3 16.0 - -
15 1 5.0 1 11.1
16 5 26.0 2 22.2
17 - - 1 11.1
Total 19 100.0 9 100.0

 

19)

132

The majority of the volunteer mothers worked inside
the home when they began the program. However, of the 13
mothers not employed outside the home, 7 mothers reported
that they planned to return to work in the future. All of
the fathers were employed outside the home with the
exception of one father who is permanently disabled. Of the
volunteers who participated as couples, 77.8% of their wives

do not work outside the home (See Table 4).

Table 3. Family Income Status of the NICU Parent Volunteers

 

Volunteer Couples Mother Volunteers Only

 

(n = 9) (n - 10)
Economic Level n % n
$10,000-15,000 1 ll 0
$15,001-25,000 6 67 3 30
$25,001-35,000 2 22 3 30
$35,001 and over 0 4 40

 

Total 9 100 10 _ 100

 

133

Table 4. Employment Status of Parent Volunteers

 

 

 

 

Mothers Fathers
(n = 19) (n = 9)
Status n % n
Currently have job 6 31.6 8 88.9
Not employed ‘13 68.4 1 11.1
Total 19 100.0
Of those not Employed (n = 13)
Plans to return 7 54.0
No plans 4 31.0
Missing data 2 15.0
Total 19 100.0 9 100.0

 

Additional characteristics of the support volunteers
were as follows: 18 of the 19 families had health
insurance: sixteen of the families owned their own home and
two rented their housing: none of the families had
additional sources of income other than employment.

All of the volunteer parents are currently married.
Seventy-eight percent of the family units have more than one
child, four families have two children in the NICU. A
description of the family composition appears in Table 5.
Mothers as a group reported forty one children. The age

distribution of the children in the volunteer parent

134
families are included in Table 6.

Table 5. Family Composition of Mother Volunteers (n = 19)

 

 

 

Number in Family Unit n %
Three 4 21.1
Four 8 42.1
Five 5 26.3
Six 2 10.5
Total 19 100.0

 

Table 6. Present Age Distribution of Children in NICU
- Volunteers' Families (n = 18)

 

 

 

Age n %
0-1 year 3 7.0
2-5 years 21 51.0
6-10 years 11 27.0.
>11 years 6 15.0
Total 41 100.0

In summary, the demographic description of the
volunteer parents indicates that most of the volunteer

parents have adequate educational and economic resource

135
bases. Mothers in the volunteer group are not
representative of those mothers most likely to deliver low
birthweight infants: under 17 years of age or over 34
years, low socioeconomic status, black, unmarried, low
education (Committee for Study of Low Birthweight, 1985) .
The mean age of mother volunteers in this sample is 30 and
most have adequate educational and economic resource bases.
eventy nine percent have more than one child. The majority
of children are of preschool or School age. Although the
majority of the mothers do not work outside of the home, 31%
are employed outside the home and 54% plan to return to.work

in the future.

Charactepistics of the Mother Volunteers' NICU Enpepience

NICU-related and current family background
questionnaires were completed by mother volunteers and
therefore reflect each mother's perceptions only. A
majority of the mothers had their NICU experience between
one and five years ago, prior to volunteering to be a
support parents, and have preschool age children at home.
It has been over five .years for 31% of the parents.
Distribution of time since mother 'volunteers' own NICU

experience is listed in Table 7.

136

Table 7. Years Since Mother Volunteers Own NICU
Experience at Time of Entry into Support Program

 

 

 

(n = 18).

Years n %
1-2 years 4 25.0
3-5 years 7 43.8
over 5 years 2 31.2

Total 18 100.0

 

Most mother volunteers did not appear to have
difficulty in conceiving' children, IHowever 44% of the
mothers (n = 8) reported pregnancy complications that
required them to be either' hospitalized. or' at. home on
extended bedrest. Fifty percent of the mothers (n a 9) had
experienced at least one miscarriage, and 4 of these mothers
had two or more miscarriages. Eleven percent of the mothers
reported previous infant deaths. Twenty-two percent of the
mothers had more than one infant in the NICU. Only one
mother reported data on two children. Two mothers indicated
that their "other" NICU child had died. Pregnancy related
variables of the mother volunteers are described in Table 8.
Mothers were instructed to check all variables that apply.
Thus, the percentage reflects the percentage of all
volunteer mothers who responded to that particular

characteristic.

137

Table 8. Types and Distribution of Pregnancy Related
Variables (n = 18).

 

 

 

Variable n %
Difficulty in conceiving 3 16.7
Pregnancy complications 8 44.4
Miscarriage 9 50.0

more than 1 4 22.2
Infant death 2 11.8
More than 1 infant death 4 22.2

Total Number of Problems 30

 

Three mothers reported that their children were
transported into the regional NICU from another hospital or
geographic area, and of these three, two mothers were able
to be transported with the infant. The majority of the
volunteers' infants who were hospitalized in the NICU were
male children. Thirty-seven percent (n = 7) of the infants
were considered normal birth weight children (2,500 grams or
more). Thirty-seven percent (n = 7) of the infants were
considered low birth weight and another 26 percent (n = 4)
very low birthweight children (Table 9). A total of 30
reasons for NICU hospitalization were reported by mothers.
Prematurity and respiratory distress were the most frequent

reason given for an infant's hospitalization in the NICU.

138
This data is summarized in Table 10. Forty percent (n = 6)
of the mothers indicated that they had been told at some
point during the hospitalization period that their infant

may not survive.

Table 9. Distribution of Characteristics of
Volunteers' NICU Infants (n = 19).

 

 

 

Characteristics n %
Sex
male 15 78.9
female 4 21.1
Total 19 100.0

Birth Weight

>2,500 grams 7 37.0
2,499-2,000 5 26.0
1,999-1,500 2 11.0
1,499-1,000 5 26.0

 

Total 19 100.0

 

139

Table 10. Reported Reason for Infant's NICU
Hospitalization (n = 19).

 

 

 

Reason Given n %
Prematurity , 14 73.7
Small for gestational age 2 10.5
Respiratory distress 11 57.9
Congenital l 5.3
Other 2 _ 10.5

Total Responses 30

 

The length of the infant's stay in the NICU ranged
from 6 days to 80 days (Table 11). A little over one-half
the infants (n = 10) were discharged in approximately one
month time or less. Thirty-six percent (n. = 7) *were
discharged between one and two months. Two infants were
hospitalized longer than two months in the NICU. Because
the number of days of hospitalization reflects the infant's
health status (Minde, 1984) , the volunteer population did
not have similar NICU experiences.

One-half the parent volunteers reported that they did
meet with other parents whose infants were in the NICU
during their hospitalization experience. Twenty-two percent

of the parents were offered the opportunity to meet with an

140
experienced support parent. One parent had requested to
meet with a support parent. Of the four’ parents who
participated in a parent-to -parent support program, all
four received telephone calls and three received a hospital
visit. No parent reported. home ‘visits by' the support

parent. A summary of this data is shown in Table 12.

Table 11. Description of Length of Infant's Stay in
the NICU (n = 19).

 

 

 

Days Hospitalized n %
Less than/equal 14 3 15.8

15-30 7 * 36.8

31-45 3 15.8

46-60 4 21.0

over 60 2 10.6

Total 19 100.0

 

Fifteen mothers (83%) reported that their infants
continued to have health problems after they were discharged
(Table 13). Of these mothers, over one-half indicated that
their children had feeding problems, and approximately 33%
had apnea difficulties. Otherwise, there appears to be a

variety of health problems reported. Mothers were directed

141
to check all health problems that apply. Thus, percentages
in Table 13 indicate the percent of mothers who identified a'
particular problem from the ' fifteen mothers who reported

post discharge health problems.

Table 12. Distribution of-Mother Volunteers' Reported
Access to Other NICU Parents during Their NICU
Experience and Type of Contact (n - l9).

 

Variable n %

 

Access to other NICU parents (n = 18)

 

Met with other NICU parents 9 50.0
Did not meet with parents 9 50.0
Total 18 100.0

Access to support parent (n = 18)

 

Offered support parent 4 22.0
Parent requested support 1 6.0
No contact offered 13 7apg
Total 18 100.0

Type of support contact (n = 5)
Calls 4 80.0
Hospital visit 3 60.0

 

Total Responses 7 100.0

 

142

Table 13. Distribution of Reported Infant Health Problems
Post NICU Discharge (n a 15).

 

:3
0?

Reported Health Problems

 

Apnea

Feeding l
Seizures

Respiratory
Hydrocephalus

Heart

Sagittal synostosis
Severe anemia

Congestive heart failure
Enlarged liver/spleen
Hydrocele

mu
mu
e e
mu

13.3

HHHNHHHHNom
H

ommummmm

ommuommm

 

Total

N
05

 

Mother volunteers were asked to rate the ease or
difficulty of infant caretaking during the first three
months that the baby was cared for at home. This rating was
elicited on a seven-point Likert-type scale with 1 =- hard
and 7 - easy. Fifty-seven percent of the parents responded
with a 1 or 2 rating. Ninety-three percent of the mothers
rated their infant's caretaking from one to three. One
mother responded ‘with a six rating. In. Table 14 the
mothers' perceptions of ease of caretaking for their NICU
infant post hospital discharge is summarized.

Mothers were also asked to respond to questions about
the health and developmental status of their NICU-involved

child at the present time. Thus, it is important to

a

143
establish the age of the NICU involved child at the time of
data collection. The age of the children varied across the
sample of volunteer parents. A little less than one-half of
the. NICU involved children of the volunteer parents were
between the ages of 4 and 5 (Table 15) . This data was
collected approximately 20 months after the parents began

their training in the support program.

Table 14. Distribution of Mother's Perceptions of
Difficulty of Infant Caretaking during the First
Three Months at Home (n - 18).

 

 

Scale n %
l = Hard 2 14.3
2 6 42.9
3 5 35.7
4
5
6 l 7.1
7 = Easy
Blank 4

 

Total 18 100.0

 

144

Table 15. Age of NICU Child at Time of Data Collection

 

 

 

(n a 18).
Age Group n %
3 and under 3 17.0
4 to 5 8 44.0
6 to 8 5 28.0
9 and above 2 11.0
Total 18 100.0

 

Thirty-nine percent of the ‘volunteer' mothers
indicated at. the time of data collection that their NICU
involved child had current health problems related to their
NICU experience. Table 16 presents a summary of the current
health problems as described by these mothers. Mothers were
instructed to list more than one health problem, if

appropriate.

145

Table 16. Mother's Report of Current Health Problems in
Their NICU Involved Children at the Time of
Data Collection (n = 7).

 

Reported Problems n

 

Cerebral palsy

Asthma

Hernia

Mental impairment
Urinary/bladder surgery
Impaired motor development
Speech problems
Respiratory

Allergies
Vision-hand/eye

Gastric reflux

HHHHHHHHNNN

 

Total

g...
b

 

Mothers were asked if they still "worry" about
whether or not their NICU-involved child will be all right.
Twenty-eight percent (n - 5) of the mothers reported that
they still worried at a moderate or good degree about
whether their children. will be all right (Table 17).
Seventy-two percent (n = 13) of the mothers identified
special concerns about their NICU-involved child that caused
them worry. Nine of the 13 mothers indicated that their
child was sick more often than other children, 7 felt their
child was lagging in development, and 5 worried about
hyperactivity. A small proportion of mothers also worried
about shyness, overdependence and discipline-related issues.

A summary of this information is in Table 18. Percentages

146
listed for specific concerns reflect the percent of mothers
who reported this concern from. the total sample of 18

mothers. Mothers could choose more than one concern.

Table 17. Mothers Reporting Worry About the NICU Involved
Child Being "All Right" (n = 18).

 

 

Worry about "Being All Right" n %
Not at all 7 38.8
Minimally 6 33.4
Moderately 1 5.6
A good deal 4 22.2
A great deal 0 0

 

Total 18 100.0

 

147

Table 18. Mothers Reporting Worry About Specific
Concerns in Their NICU-Involved Children.

 

 

 

n %

n = 8
Worry about specific concerns 13 72.0
No reported concerns 5 28.0
Total 18 100.0

Type of concerns n a 13
Hyperactivity 4 22.2
Discipline 3 16.6
Shyness 4 22.2
Overdependence 3 16.6
Lagging in development 7 38.8
Sick more often than others 10 55.5
School related 5 27.7

Total 36

 

An assessment of common family stressors that
occurred during the period of support program participation
was also included in this study. Mothers indicated that
their families are experiencing' ‘many' normative and
situational stressors common to young families. Over 40
percent had experienced moving, 22 percent husband's job
loss, husbands' job change, and own job change. Thirty-
eight percent experienced the illness of a significant

other. It is not known whether this is the NICU- involved

148
child or another person. Thirty-three percent also
indicated that they were stressed by problems with their own
parents. Table 19 is a summary of the distribution of these
stressors. Percentages indicate the jpercent of“ the 18
mothers who reported the individual item, since mothers

could choose more than one stressor.

Table 19. Distribution of Mothers' Perceptions of
Additional Family Stressors during Period of
Program Participation (n a 18).

 

 

Variable n %

Job loss - husband 4 22.0
Change in jOb

Father 4 22.0

Mother 4 22.0
Moving 8 44.0
Beginning school 8 44.0
Finishing school 2 11.0
Death of a significant other 3 16.0
Illness of significant other 7 38.0
Problems with parents 6 33.0
Other _ 3 16.0

Unplanned pregnancy 3 16.0

 

Total , 52

 

149

In summary, a few characteristics tend to distinguish
this group of volunteer parents from all NICU parents.
Almost one- half the volunteer mothers suffered pregnancy
losses (miscarriage or infant death) and 44% experienced
pregnancy complications that curtailed their activity.
Seventy-three percent of the infants born to the volunteer
mothers were premature and 63% were low birthweight infants.
A majority of the infants were hospitalized for respiratory
distress problems. Acuity of the infant's health problems
was not directly' measured, although 36% of the mothers
indicated that they had been told their baby may not
survive, and 47% were hospitalized over 30 days in the NICU.

Half of the mothers sought out other NICU parents
during their own hospitalization. This may have occurred
informally or at a structured parents' meeting in the NICU.
Most (72%) of the volunteers did not have access to an
experienced NICU support parent while in the NICU.

One of the distinguishing characteristics of the
volunteer mothers was their report of difficulties during
the post discharge period" .A :majority of the 'mothers
reported difficult caretaking experiences in the first three
months home. Eighty-three percent of the mothers reported
continuing health problems during the immediate post
discharge period, with over half of the mothers reporting
feeding problems.

At the present time, sixty-one percent of the

150
volunteer mothers have preschool age children at home,
thirty-nine percent have school-age children. Thirty-nine
percent of the mothers perceive their children to - have
continuing health problems presently which the mother
relates to the NICU experience. There was a wide range of
severity of problems described such as cerebral palsy,
mental impairment, allergies, and frequent respiratory
diseases. A large number of mothers (72%) indicated that
they are worried about concerns in their NICU children, such
as. hyperactivity, developmental lags, and. school related
problems. Mothers also reported a number of normative or
situational family stressors unrelated. to the iNICU

experience.

Question Two: What was volunteer parents' level of
involvement?

Volunteer parents' level of involvement was measured
by assessing the amount of time a parent spent in program-
related activities. For’ analysis, program related
activities were divided into activities related. to
supporting' the new' NICU families, activities related 'to
volunteer training and supervision/support meetings, total
time for both activities, and number of NICU families
served. The time period of activity for reported data for
training and supervision sessions was November, 1984 to July

1986 (20 months). The period of activity for reporting data

151
for direct NICU family is March 1985 to July 1986 (sixteen

months).

Fat ers' nvo vement

Six of the nine fathers reported data on the Levels
of Involvement Questionnaire. Only two fathers completed
the questionnaires. Of the six fathers reporting data, the
hours that fathers had contact with NICU families ranged
from 2-45 hours, with a mean of 15.8 hours. The number of
families served range from one to six, with a mean of 3
families served. Only two fathers included the amount of
hours in preparation and supervision meetings, with a mean
of 43 hours for these two fathers (Table 20).

It is not known why the fathers' activity is reported
for direct family care and not other program activities.
The program coordinator reported that the fathers regularly
attended the training and supervision sessions, but no
records could be used to document their participation.
Thus, the fathers data set is limited in this study and no

further description of the data will be presented.

152

Table 20. Summary of Father Volunteer Hours of Support
Program Activities and Number of NICU Families
Served (n = 6).

 

# of Fathers Total/Hrs Train/Hrs Support/Hrs # Family

 

 

l 85 40 45 3
1 68 46 22 6
l 11 missing 11 5
l 9 missing 9 2
1 6 missing 6 2
l 2 missing 2 1
Total 181 86 19

 

Mothe s' Invo vement

Mothers' level of involvement in all program
activities ranged from 12 to 221 hours and varied greatly
across the study sample (n =‘ 18) . The summary statistics
for mothers' involvement in training, direct family support
activities and number of families served is presented in
Table 21. Mothers reported a range of 0-179 hours in direct
NICU family contact, with a mean of 34.5 hours. The number
of NICU families served ranged from 0-9. The variance in
reported hours can be accounted for by three mothers who
reported hours in excess of 100 hours and two mothers who
were not assigned families. Since the mean is unstable in

the presence of extreme scores, an adjusted mean was

153
calculated for the group, excluding these five mothers, at
16.33 hours. The reported hours for participation in the
program training and support/supervision sessions ranged

from 12-46 with a mean of 32.7 hours.

Table 21. Summary Statistics for Mother Volunteers Level
of Involvement (n = 18).

 

NICU Family Train/Sup Total Hrs # Families

 

Mean 34.6 32.8 65.4 2.8
*adjusted X 16.3 44.1

8.0. 49.0 9.9 54.2 2.3
Variance 2422.9 97.9 2935.4 5.3
Median 12.0 35.0 48.5 2.5
Range 0-197.0 12-46.0 12-221.0 0-9.0
Missing 2 1 1 l

 

* adjusted mean: Mothers who reported over 100 hours and
mothers who reported no hours for NICU
family activity were omitted.

154

Because of the wide range of participation time, the
volunteer mothers were categorized into groups of high,
medium and low participation. Those three mothers who
recOrded over 100 hours of family contact, were categorized
as high involvement. There were two clusters in the
remaining data, and these were designated moderate and low
involvement. The number of mothers and the percent of the
total mothers in each group are indicated in Table 22.
Additionally, the range and mean are reported for the total

volunteer time.

Table 22. Volunteer Mothers' Level of Involvement (n = 18).

 

w

Groups n % Range x Total Time

 

High involvement 3 16.0 147-221 172
(over 100 hours)

Moderate involvement 7 44.5 48-76 61
(48-76 hours)

Low involvement 8 30.0 12-40 29

 

In summary, parent level of involvement was reported
separately for mothers and fathers, since the fathers' data
was incomplete. Why fathers did not report all program
activities is not known. Two complete data sets are
insufficient to accurately describe the sample. Mother

volunteers indicated a wide variation in reported time spent

155
on program activities, especially direct family contact.
Three categories were delineated to further describe the
variation in mothers activities. Overall, a small number of
mothers (16%) were placed in the high involvement category,
with over 100 hours of activity. Forty-four percent of the
mothers indicated a moderate involvement, between 48-76
hours. Thirty percent of the mothers were categorized as
low involvement, with 12 to 40 hours of involvement. No
study data was collected that could explain the variation in

mother's level of involvement.

Question Three: What are volunteer parents perceived
effects of participation?

Volunteer parents perceptions of program effects were
measured using an investigator developed, five-point,
Likert-type scale. The scale ranged from no effect at all,
minimum effect, moderate effect, a good deal of effect to a
great deal of effect. The content of the items of the
perceived effects scale were identified as either additional
resources or additional demands provided by the program.
Psychometric investigation of the effects scale will first
be reported. Next, reported effects for all parent
volunteers, as a group, will be presented. These effects
will be reported by description of each individual scale
item and the percentage of parents response on the scale.

Because of the limited reported participation of fathers,

156
responses of mother and father volunteer parents will then

be analyzed separately.

Ps . ometr'c nvest ation o t ects ca

Internal consistency of the items on the effects of
participation scale was evaluated using coefficient alpha.
Two subscales were formed, the resources and demands scales.
Coefficient alpha for the total scale is .90, for the
resources subscale, .90, and for the demands subscales, .80.
The alpha of the resource scale could only be improved
minimally (.00285) by the removal of items nine and four.
The interscale correlation for the subscales is .56
indicating a moderate level of correlation between the
subscales. The mean score for the total scale is 59 out of
a possible 105. The mean score for the resource scale is 43
out of 65. The demands scales has a mean score of 15.15 out
of a total 40 (see Table 23). Interitem correlations are
included in Table 23. Items that correlated greater than
.700 include: Ql(coping) and Q2 (self esteem);
Q15(information on parenting and family) and Q7 (own NICU
feelings), Q16 (gain support from other volunteers), Q17
(sense of involvement); and Q13 (stressed own family needs)

and Q19 (stress with spouse).

157

Table 23. Effects Scale Reliability Statistics (n = 26).

 

 

Number of Items Resources Demands Total Scale
Number of Items 113.0 8.0 21.0
Alpha ' .90 .31 .90
Means 43.0 15.15 59.38
Variance 107.52 20.54 180.89
Standard Deviation 10.37 4.53 13.45
Item means ”3.31 1.89 2.69
Item variance .13 .30 .76

Inter-item Corr.

Mean .45 .35 .31
Variance .03 .02 .04
Range e07 - e76 006 - e78 e34 - 's78

 

.A moderate correlation appears to exist between the
subscales in the total scale of effects. Further analysis
is necessary to determine those items that are correlated.
Perhaps some resources become more available to parents, as
the demands of participation increase. This can only be

viewed as speculation at this point.

Reported Effecps of Participation by All Voluntaer Parents

Twenty-six parent volunteers responded to the effects

of participation scale. The percentage of parents who

158
responded in each category for the specific scale item is
described in Table 24. Some items were not completed by all
26 parents and missing data were not included in the
perCentages of the item.

Of the resource items, five items received a rating
of a good or great deal of effect by over 69 percent of the
parents. These items include, in order of highest percent,
item 17, a sense of involvement in worthwhile work: item 7,
working through feelings about own NICU experience: item 15,
gained information about parenting and family relationships:
item 2, feel better about self as a person: and item 8,
feel "energized" helping others.

Thirty-one percent of the parents indicated that they
experienced painful memories of their own NICU experience as
an effect of participation at the good or great level. Only
8 percent of the parents indicated that any other demand
items wee at a good or great degree rating. Feeling
inadequate to help the NICU families at a moderate degree
was reported by 40 percent of the parents. Scale items for

all volunteer parent are summarized in Table 24.

Mothe; Volunteers Ezfects

Table 25 lists mothers' responses to items on the
effects of participation scale. Items are ranked for
resources and demands according to the highest means for

each individual item. Eighty-two percent of the mothers

159
reported experiencing a sense of involvement in worthwhile
work at a good or great level. Seventy-seven percent also
felt that they had gained valuable information about
parenting and family relationships and that they have been
able to work through their own feelings about their NICU
experience again at a good or great degree. Other effects
that 50 percent of the mothers perceived at the good or
great level include feeling better about themselves as
persons, gaining support from the other parent volunteers,
feeling energized from helping others, increased
communication skills, and feeling good about helping others.
An additional finding is that 40 percent of the mother
volunteer indicated that they had received emotional support
from the program nurse for their own family stressors to a

great degree and 33 percent not at all.

Table 24.

160

Percentage of All Parent Volunteers Reporting

Specific Effects of Program Resource and Demands

(n = 26).

 

Percent of Responses

 

 

 

'14

Not Good Great
Item Resource/Effects At All Min Mod Deal Deal
1 Ways to cope 7.7 11.5 42.3 34.6 3.8
2 Feel better 3.8 7.7 19.2 65.4 3.8
4 Increase resources 8.0 32.0 20.0 32.0 8.0
6 Increased
Communication 0.0 15.4 34.6 38.5 11.5
7 Work on feelings 0.0 11.5 15.4 61.5 11.5
8 "Energized" 7.7 0.0 23.1 30.8 38.5
9 Feel good 12.5 8.3 20.8 41.7 16.7
10 Valuable experience 15.4 42.3 15.4 15.4 11.5
12 Parenting confidence 11.5 11.5 50.0 23.1 3.8
15 Gained information 3.8 11.5 11.5 57.7 15.4
16 Others support 7.7 15.4 26.9 34.6“ 15.4
1? Sense of involvement 0.0 3.8 19.2 50.0 26.9
21 Nurse support 30.8 7.7 19.2 7.7 34.6
Percent of Responses
Not Good Great
Item Demands/Effects At All Min Mod Deal Deal
3 Worry more 34.6 38.5 23.1 3.8 0.0
5 Emotional drain 34.6 46.2 15.4 0.0 3.8
11 Felling inadequate '20.0 40.0 40.0 0.0 0.0
13 Stressed 61.5 19.2 11.5 3.8 3.8
Less energy 50.0 38.5 7.7 3.8 0.0
18 Painful memories 7.7 15.4 46.2 23.1 7.7
19 Marital stress 80.8 15.4 3.8 0.0 0.0
20 Financial strain 61.5 19.2 19.2 0.0 0.0

 

161

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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162

Almost one-half the mothers indicated that
participating in the program caused them to experience
painful memories of their own NICU experience to a moderate
degree. Thirty-five percent of the mothers have felt
inadequate to help the new families and 28 percent worried
about their own family more to a moderate degree. A small
percentage of the mothers did indicate feeling less energy
for their own family's needs and emotionally drained from

their support parent role.

,Fathe Volun e s e ts

Summary information on fathers' responses to the
effect of participation items is provided in Table 26.
Seventy-five percent of the father volunteers indicated that
they experienced a sense of involvement in worthwhile work
to a good or great degree and felt better about themselves
as persons to a good degree. Sixty-two percent of the
fathers responded that the program affected a good deal, the
following items: abilities to work through their feelings
about their own NICU experience, abilities to find more
resources that their own family can use, gained information
on parenting/family relationships, skills in communication,
and feeling good about giving help because they have
received help. Fifty percent of the fathers also responded
that they gained a moderate degree of support from other

volunteers and confidence in their own parenting abilities.

163

 

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164

Eighty-three percent of the fathers indicated that
participation stimulated painful memories of their own NICU
experience to a moderate or good degree. Sixty-six percent
responded that they feel inadequate to help others to a

moderate degree.

0 en-e d d es o s s to Effects of Pa ci i

Because of the descriptive nature of the research and
the preliminary development of an effects scale, parents
were asked to respond to four open-ended questions that
asked them to identify any other resource or demand effects
from their program participation on themselves or other
family members. Thirteen mothers and four fathers responded
to the open-ended questions. It appears that parents
mostly' used the open-ended items to elaborate and. give
examples of the resources or demands listed in the scale.
Thus, the items for the scale were used to categorize the
additional responses(See Table 27). Responses that did not

fit the categorization will be described separately.

165

Table 27. Categorization and Distribution of Volunteer
Parent Responses of Perceived Program Effects

 

 

 

(n =13).
' Number of
Item Number Similar Responses
Resources
15 Information on family parenting 4
9 Giving help 4
6 Communication skills 3
7 Own NICU feelings 3
12 Parenting abilities l
16 Support from other volunteers 1
2 Self esteem 2
Qéméfléé

5 Emotionally draining 2
11 Inadequate to help 1
20 Financial strain 1
Total number of responses - i 22

 

Most of the items that parents chose to elaborate on
in the open-ended response section were items that they also
rated highly in the percentage of respondents rating at the
good or great degree of effect. The scale items information
on parenting/family relationships, working through own NICU
feelings and feeling better about self as a person were
ranked in the top five resource effects for all parents.
Although only three percent of the total parents identified

emotional strain as great effect of participation, two

166

parents did comment on the emotional demands of the program.
Financial demands of long' distance telephone calls and
mileage in the rural areas was also noted by one parent.

Three resource categories, which were not included in
the scale, were identified. One category might be clustered
as family closeness or marital closeness ("feeling closer,
understanding our own situation"). Although martial stress
was included in the demand scale, marital closeness might
also be worth testing. Another category seems to cluster
around a social comparison theme, "we are not the only ones
with a special needs child." Six parents made comments that
clustered around the third resource category of benefits to
the volunteer's children. Comments included: "our children
learning about helping others", "my children are more
outgoing", "my children are more sensitive to impaired
children", "enjoyed the family social activities with our
children". Two parents also indicated that their own
feelings toward their NICU child made it better for all.

Parents identified three additional demands: (1)the
difficulty of evening meetings with family responsibilities:
(2) feeling the pain a lot of these new parents have and not
being able to help more; and (3) finding child
care/babysitting resources in order to be with NICU
families.

167
The parents responses to the open-ended items appear
to lend further support and are consistent with the scaled
items. Additional resource and demands were generated by
parents that may be useful in the further development of the

scale.

Response to Global Item on Program Resources and Demands

Parent volunteer were asked to respond to one
question that was written in order to have the parents give
a global assessment of the program's resources and demands
and their relationship to each other. Parents were asked if
the program resources were greater than demands, if
resources equaled demands, or demands were greater than
rewards (Table 28). Fifty' percent. of the :mothers and
fathers indicated. that they received more resources than
demands in the program. Thirty-seven percent of the mothers
and 25 percent of the fathers indicated that the resources
and demands were equal. Twelve percent of the mothers
reported that the program, demands exceeded the program
resources. Overall, it appears that most parent volunteers
experienced more resources than demands as effects of
participation, although these findings raise concern about
whether the effects scale was able to adequately assess

program demands.

168

Table 28: Parent Volunteers Global Assessment of Resources
and Demands

 

 

 

 

(n - 18) (n - a)
Demands n % n %

More benefits 8 50.0 4 80.0
Benefits - demands 6 37.5 2 20.0
More demands 2 12.5
Blank 2 2

Totals 18 100.0 8 100.0
Summa o e s of art' o

In summary, both mothers and fathers were able to
identify resources and demands from program participation.
The three highest scoring resource items were similar for
fathers and mothers. They include, in order of highest mean
score, a sense of involvement in worthwhile work, working
through feelings about the parent's own NICU experience, and
gaining information on parenting and family relationships.
The latter two items show an interim correlation of .76.
The next group of items are feeling better about oneself as
a person, and feeling "energized" helping others. After
these items, volunteer mothers and fathers show some

differences. On the demand scale, the highest item mean

169

score was for painful memories of their own NICU event,
followed by feelings of inadequacy in helping others.
Although the means for other demand items were 2 (minimal
effect) or below (not at all), there were a few parents in
the other categories that warrant concern, since a good or
great deal of stress on even a few volunteer parents is of
concern from a clinical perspective.

§BEE§£¥

In this chapter, descriptive data were presented in
order to describe characteristics of parents whose infants
were previously involved in the Neonatal Intensive Care Unit
and who subsequently volunteered to be a support parent to
parents currently involved in the NICU. Frequency
distributions were presented for characteristics of the
volunteer parents and related family variables, and for the
parent's level of program involvement. Perceived effects of
parents participating in the support program were described;
also reliability’ of the instrument ‘used to assess such
effects was reported.

A summary and analysis of the study findings will be
presented in Chapter VI. A family ecological perspective
will be used to organize the descriptive data. Using
Robert's nursing conceptual framework, recommendations for
nursing research and education will be given. Statements of
conclusions and a discussion of these conclusions will also

be delineated.

CHAPTER VI
SUMMARY AND CONCLUSIONS
Overv ew

An exploratory descriptive study was conducted to gain
insight into the experience of parents whose children were
previously involved in the Neonatal Intensive Care Unit and
who returned to the NICU to function in a parent support
role. Descriptive research can be conducted by using
categories or organizational schemes that already exist in
the literature and by finding cases or classes in the data
that correspond to the classification scheme taken from the
literature (Schatzman and Strauss, 1982). Since little is
known about NICU support parents, a broad organizational
scheme, a family ecological framework, was used to focus the
collection of descriptive data. Survey methodology was used
to gather data on volunteer support parents' background
characteristics, level of involvement, and parents'
perceptions of the effects of their participation. A
preliminary attempt to construct a scale to measure effects
of participation, conceptualized as additional resources and
demands of the support parent role, was evaluated.
Consistent with the goals of descriptive methodology,
specific conclusions can not be generated from data
analysis. However, an integration of the descriptive

findings, using the ecological framework, will be useful in

170

171
focusing the research analysis. Recommendations for future
research, based on this exploratory study, will be
described. Robert's nursing model will be used to identify
implications for the clinical nurse specialist in primary

care settings and volunteer support program roles.
esea ues ns

Question One: 'What are the background characteristics of
NICU volunteer support parents?

For the purposes of this study, background characteristics
were identified as demographic, current family-related and
NICU historical characteristics. Data from each of these
categories of background characteristics will be summarized

and analyzed.

Demographic Characteristics
An analysis of the study data indicates that this group of

NICU parents, who volunteered for the support program, do
not fit the demographic characteristics usually associated
with. mothers who deliver preterm. infants and. are
subsequently hospitalized in the NICU. Characteristics of
women who are most likely to deliver low birthweight infants
include: less than 17 years or over 34 years of age, black,
low socioeconomic status, unmarried and low level of
education( Committee Report on Low Birthweight, 1985). This

particular group of mothers had a mean age of 30.8 years, a

172

median level of education at 13.5 years, all were married,
and all were white. Fathers who participated in the program
had a mean age of 30 and a median level of education at
12.5. Only one family was below the national median income
for white families in 1892 at $21,117 ( U.S. Bureau of the
Census, 1984). Fifty-two percent of the mothers and 77.8%
of the fathers indicated a family income between $15,001 and
$25,000, comparable with the national median income. Nine
mothers reported incomes over $25,000. Participating
families appeared to have adequate family resources of
education. and income. Couples 'who jparticipated in the
program . were in the more moderate income group, while the
mothers group had a range of income and education levels.
There was a small group of mothers from higher income and
education brackets.

Thirty-one percent of the mother volunteers in the study
sample were employed outside the home. This is lower than
the 45.7% reported for U.S. mothers, over 16 years of age,
in the labor force( U.S. Bureau of the Census, 1984). The
majority of the mothers planned to return to work in the
future. Their employment status could reflect the health
demands of their NICU children, but no data was collected to
understand their employment status. Videka (1982) reported
that in a program of volunteer support persons who have had
heart surgery, many of the volunteers, who were retired or

, recently retired indicated that the volunteer role helped

173
replace a lost work role. -This may be true for some mothers
who were unable to resume employment work roles outside the
home because of the demanding caretaking needs of their

infants, yet desired some work role.

Fam Re a ed C a cter stics

Seventy-eight percent of the families have more than one
child in the family. Thirty-six percent of the volunteer
families have three or more children. The mean number of
children for the sample was 2.2 children per family. This
varies from the national average of less than one child per
family (U.S. Bureau of the Census,1984). It also calls
attention to the fact that the NICU children have siblings,
and parent's have other children whose needs require their
attention. No assessment was made of the needs of other
children in the family, their health status, or mother's
worries about the behavior and development of these
children.

Many of the volunteer families (68%) have children in the
preschool range. Previous studies suggest that this may be
a vulnerable time for parents of children who were
critically ill at one time. This vulnerability to parenting
difficulties may be due to the parent's potential for an
aborted or delayed grieving process coinciding with the
developmental tasks of individuation and separation for the

preschool child (Naylor, 1982) Seventy-two percent of the

174

mothers indicated that they worried about specific socio-
behavioral and developmental concerns in their NICU involved
child, such as hyperactivity, discipline, development lags
and school related problems. Eight mothers checked one to
three of these specific concerns, while seven mothers
checked four to six concerns. This seems to indicate that
there are some unresolved health concerns and needs in the
population of families with children previously involved in
the NICU. The specific concerns that were evaluated were
drawn from the literature on parenting dysfunctions which
may follow a child's critical illness. Thus, further study
of parent-child interaction after a health crisis would seem
to be indicated. No data was collected as to whether the
mothers had any resources to deal with these problems.
Information on available resources to deal with. such
concerns may explain the mother volunteers' interest in
participating in the program. This notion is speculative
and cannot be supported with the data in this study.

Parents. also indicated. numerous other’ family' stressors
that have occurred to them during the period they
participated in the program. The sample parents reported
experiencing many changes that are consistent with their
particular phase of the family life cycle. Job, further
education, housing changes and problems with parents are not
unexpected changes for young families, yet are stressful. A

few of the parents however, were experiencing major

175
stressors with significant persons in their life, such as
death or illness. Three mothers reported unplanned
pregnancies, two of these mothers were limited in their
activity during the course of the pregnancy. ~Four families

indicated that the father had recently lost his job.

N CU H st c Ch racter st cs

The parent volunteers, who participated in the study, can
be further distinguished by characteristics related to their
own NICU experience. Forty-seven percent of the mothers
experienced pregnancy complications that required extended
bedrest or hospitalization. Over 50 percent of the
volunteer mothers have also dealt with pregnancy losses
(miscarriage, multiple miscarriage or infant death) in the
past. Eighty-two percent of the volunteer mothers delivered
low birthweight infants. Three mother volunteers indicated
that they have or are now experiencing high risk pregnancies
since participating in the program and have curtailed their
support functions. Those mothers who have delivered a
premature infant are at higher risk than the average woman
to have another premature birth (Goldberg & DeVitto, 1983).
This would lend support to the notion. that the 'mother
volunteers, as a group, are more at risk for less than
optimal future childbearing.

The NICU-involved children of the mother volunteers also

share some characteristics related to. health. Eighty-two

176

percent of the children were low birthweight infants. The
majority of the infants were hospitalized for prematurity or
respiratory distress. Forty percent of the parents
indicated that their children's survival was in jeopardy
while in the NICU. Although the length of hospital stay
varied, there were seven infants who experienced lengthy
hospital stays (over 37 days duration). Infants with
lengthy NICU stays, usually have experienced more severe
illness and those infants whose mothers were told that the
infant might not survive, are at risk for future parenting
dysfunctions (Minde, 1984).

The majority of the NICU volunteers (76%) did not have
access to support from an experienced NICU parent during
their own NICU experience. This group of parents also
reported stress in infant caretaking in the first three
months post discharge. Over half of the parents reported
feeding difficulties at this time, in addition to other
health problems that continued in the early months at home.
This suggests that the volunteer parents may be those NICU
parents who had difficult early parenting experiences and
did not have support resources that could help them cope
with the infant's caretaking problems. However, an
assessment of other parenting support resources that were
available at the time of early parental caretaking was not
included in this study.

An analysis of the NICU-involved child's health and

177
development was accomplished to identify any characteristics
that might differentiate the NICU volunteers from other NICU
parents. Forty-two percent of the mothers indicated that
their NICU children had continuing health problems. This is
a higher rate than is estimated for the total NICU
population at 5-15% (Kopp and Parmelee, 1979). The
percentage of the support group children with problems may
be inflated however, because identification of continuing
health problems was made by maternal self report versus

documentation of medical diagnosis.

In summary, the group of NICU parents who volunteered for
the support role were primarily white, middle class and
married. They seemed to have adequate economic and
educational resources to support family functioning. Their
experiences in the NICU, including the infant's length of
stay, and the infant's health status, varied. The volunteer
parents appeared to have lacked access to parenting support
persons themselves while they were in the NICU. A majority
of parents were characterized by early parenting
difficulties during the early post NICU discharge period,
and many reported health and caretaking problems with their
infants. At the time of the study, many of the mothers
indicated that they worried about specific health and
behavioral concerns in their NICU-involved child and a

little less than half reported that their NICU-involved

178
children have continuing health problems. Most of the
families of the volunteer parents have other children of
preschool or school age. Volunteer mothers also report many
additional family stressors that have occurred during the;

period of their participation in the program.

Question Two: What is the NICU support parent's level of
involvement in support program activities?

Of major interest in this study was the nature of the
transactions between the volunteer parents and the support
program. Level of parent involvement in program activities
was viewed as an indicator of the volunteer parent-support
program transaction. Program activities included training
and supervision activities and direct family contact
activities.

Only two father ‘volunteers completed data on program
activities. Six fathers responded to the question regarding
amount of time spent in direct NICU family contact, with the
range of hours from 2 to 85. Two fathers indicated over 65
hours of participation, and the other four fathers ranged
from 2 to 11 hours. Only two fathers responded to the
question of time spent in training and supervision meetings,
one father indicated 40 hours, while the other, 46 hours.

It is difficult to understand whether the fathers
underreported time spent in activities, or whether there was
little participation by the fathers in the group. Although

only two fathers reported time spent in training and

179

supervision meetings, the program coordinator has indicated
that most of the fathers completed at least the first 24
hours of training. No accurate records can confirm this
clinical impression. It is very difficult to determine what
aspects of the program affected the additional resources
indicated by the fathers. Father participation in a
volunteer' parent support. program. is an. area. that needs
further descriptive research.

Over twenty months, mother volunteers invested between 24
and 36 hours in training and supervision activities, with an
average of 32 hours. Mothers varied widely on the amount of
time that they spent in enactment of the support role with
NICU families. The range of hours of involvement with NICU
families (0-179 hours) indicated that some volunteers did
not have any assigned families, while three families
indicated over 100 hours of activities with NICU families.
Nothing was discovered in the literature that documents the
amount of hours volunteers spend in a parent-to-parent
support program.

In summary, data on volunteer fathers level of program
involvement was complete on only two father volunteers and
thus could not be used to adequately describe father
involvement. Mother volunteer involvement was characterized
by a wide variation in hours spent in direct family support
and number of families served. Less variation was noted in

involvement in training and supervision activities. No data

180
was collected that could be used to help interpret the
varying levels of involvement.

Many variables determine the amount of time a volunteer
spends in direct support activities. The needs of the new
NICU family for support, the time resources of the volunteer
parent, the number of referrals the volunteer parent is
given, the number of families that deliver NICU babies in
the volunteers geographical area and the interpersonal
skills of both the volunteer and the NICU family are a few
of these variables.

It is difficult to interpret the meaning of the wide range
of hours in volunteer work. All of the volunteers that were
not assigned families lived in a rural outreach site. In
this particular area, a perinatalogist has recently set up a
practice to provide care to high risk mothers. He has
chosen to hospitalize the mothers and their infants in
another regional NICU in the state.

It would be helpful to know what kinds of families were
referred to the volunteer, and an estimate of the program
services needed. Because there 'are scarce follow-up
services for NICU families in the rural geographic area,
some of the volunteer families may have given more extensive
support to such families. It may also be the case that the
volunteer enjoyed the relationship with the NICU family, and
more frequent meetings met the social needs of both

families. The only implication that can be drawn from the

181
reported number of hours spent in volunteer activities is
that the volunteers invested varying amount of their own and
the family's resources. There appears to be some over
involvement and under involvement of volunteer families.
This could be related to_ the family's maintenance of the
family units boundary. No data was collected that could be

used to help interpret the varying levels of involvement.

Question Three: What do NICU volunteer support parents
identify as perceived effects of their involvement in the
support program?

Overall, the majority of both mother and father volunteers
reported that program participation provided them with more
resources than demands. Thirty-seven percent of the parents
indicated that the program resources equaled program
demands. Two parents did indicate that demands were greater
than program resources. Eight of the 13 resource variables
were identified, by over 50 percent of the parents, as being
affected by the program to good, or great degrees. These
selected variables will be analyzed for implications.
Although a majority of parents did not perceive any of the
program demands at a good or great degree, there were a few

reported demands that are notable. These variables will

also be analyzed.

182
Pr esou ec s
At least 75 percent of the mother and father volunteers

indicated that they experienced a sense of involvement in
worthwhile work, at a good or great degree. Over 60
percent indicated an effect of an increase in self esteem
and feeling "energized" by this work at this same degree.
This may be of importance for parents who have experienced
a difficult parenting situation where there are limited
opportunities, particulary in the first year of the
infant's life, to receive positive feedback in response to
their parenting behavior. These parents may also be
somewhat socially isolated from other sources of support
as an effect of their children's health status. Perhaps
the volunteer program is a means for couples to work with
their spouses in some kind of altruistic endeavor.

These particular effects may reflect different styles of
helping relationships. Abramson (1984) described four
styles of helping relationships in a widow-to-widow program.
The first style ‘was an informative-supportive, non-self
revealing model. Volunteers were usually busy active
people, who do not see the program as a means of their own
growth, but liked to feel needed. The second style was
described as emotive-supportive, non-self revealing model,
where the volunteer felt that she was helped by others and
wanted to help others, and that the experience would help

her grow. Widows who used one of these two helping styles

183

may show more low or moderate involvement. The third style
was described as emotive-supportive, some self revealing and
is characterized by mutual sharing. An increase in self
confidence, a positive self image and an understanding of
the widow's own development was the rewards for these
volunteers. Many of the NICU parent volunteers were able to
identify these resources in the effects of participation
questionnaire, and this style of helping may predominate in
the NICU program. The fourth style of helping was
characterized by widows who were most isolated from others,
and the program was a way to make social contact with
others. Feeling needed and appreciated ‘were important
rewards for this style of helping. It would be interesting
to know what style of helping might correlate with level of
involvement and specific effects of participation.

Many parents took the opportunity on the open ended
resource questions to indicate again, how good it felt to
help. Others stated how much they valued thinking about
others and the program gave them this opportunity to do
something. A majority of the parents did rate the item that
described "feeling good about giving help after receiving
help" at‘a good or great degree. ~One parent commented that
she liked activities that were family involved, and this
experience had been an opportunity for her children to learn
about giving' help ‘to others. Several families. commented

about the limited resources of the families they were

. 184
working with, and how that gave them a new perspective about
their own difficulties and resources. This finding, that
the program may contribute to the NICU volunteer parent's.
emotional well-being, is important and requires further
study. The parents increase in positive feelings about
themselves and the important work they are doing with new
families are important resources that may potentiate their
functioning in their own family system. V

Over 60 percent of both mothers and fathers also reported
gaining increased information on parenting and family
relationships. In the open-ended responses, some parents
indicated that they had learned a lot of new information
about babies and parenting and were sharing this information
with relatives and friends. Another parent indicated that
the new findings about the behavior of premature infants
helped her understand her own parenting difficulties and
especially her angry feelings toward her premature children.
One parent acknowledged that he was probably overprotective
of his son and needed to work on that particular aspect of
his parenting relationship. A few parents indicated that
they had learned a lot about how families behave under
stress and the importance of having others to help. One
father indicated that he had learned ways to better cope
with the daily experiences of raising a special needs child.

This finding calls attention to the possibility that

parenting information, especially information that relates

185

to the preterm infant and the parenting difficulties in the
first year of life, may not be effectively disseminated to
parents after the baby is discharged from the NICU. Health
care providers in the neonatal intensive care unit may be
aware of more recent studies related to parenting and
developmental interventions, but they see few NICU families
for follow-up care. Thus, an important effect of
participation appears to be that the volunteer program is a
good vehicle for the delivery of health promotive
information to a population of parents that may include high
risk families.

Seventy-eight percent of the mother volunteers and 62
percent of the father 'volunteers indicated. that. working
through their own NICU feelings was a program effect to a
good or great degree. Prior studies suggest that the
interrupted grieving process of NICU parents may be an
important factor in the future parenting of the NICU child,
especially in the preschool years. Little is currently
known about the grief process of parents of critically ill
children. Volunteer’ parents' responses to this effect
suggests that the grief process may well continue into the
child's preschool years. .Additionally, it. appears *that
through participation in a volunteer program, parents may be
helped to gain a new perspective of their own NICU event.

Grieving a loss through to resolution :means that the

individual has been able to abstract meaning from something

186
which initially seemed overwhelming (Schneider, .1986) .

Marris states:

"when a pattern of relationships is
disrupted in any way for which we are not
fully prepared, the thread of continuity
in the interpretation of life becomes
attenuated or altogether lost. . . .the
loss may fundamentally threaten the
integrity of the structure of meanings on
which this continuity rests, and cannot
be acknowledged without distress. . .
.there must be reinterpretation of what
we have learned about our purposes and
attachments. . . . the loss must first be
accepted as. something we have to
understand. . . .it will also lead us to
repair the thread, tying past, present
and future together again with rewoven
strands of meaning."(Marris, 1974, p.89)

Thus, the opportunity for volunteer parents to
reexamine their own NICU experience from a more objective
perspective in the volunteer training group, may serve a
therapeutic function. One mother states: "Now that I
understand my NICU experience, I take less emotional baggage
into my relationship with my NICU child, and that is better
for all of us." The angry feelings that accompany normal
grieving are frightening for parents to handle and often get
repressed. One mother indicated that she now "understands
her angry feelings towards her NICU children and accepts
that they were normal." A father also reported that a
better understanding of his own feelings, which he gained
through the program has "averted a great deal of stress at
home, benefiting the entire family."

Recently theorists have come to conceptualize this

187

phase of resolving grief as a turning point. Harris (1974),
ParkeI (1981), Moustakas (1977) and Schneider (1984) have
suggested that loss, and the grieving process that
accompanies it, are opportunities for personal growth.
Regaining a sense of meaning may be a source of drive toward
change and growth for the volunteer parents. This notion
was supported in the Videka-Sherman study with a sample of
mothers whose children had died (1982) . The mothers were
participating in a parent support group for bereaved
parents.

Fifty percent of the parents responded to the item that
described an increased ability to talk and listen to others
at the good or great degree. This finding may be reflecting
the goals of this particular program's volunteer training
sessions. In these sessions, parents learn and practice
communication and peer counseling skills. However, this
finding also supports the notion that participating in the
program as a volunteer may enhance the parent's abilities.

For 60 percent of the mother volunteers, support from
other volunteers in the group was affected by the program
at a good or great deal. This may be due the additional
demands of caring for preterm children after discharge,
especially if the child is health impaired and the
restrictions on social activities accompany this. It is
often difficult, especially in the rural areas, to find

parents whose parenting experiences are in any way similar.

188
Thus, the parent training and supervision sessions offer a
ready-made group of parents with similar experiences. The
group as a whole also have a variety of experiences and
access a variety of resources. The questionnaire item did
not specify the kind of support the parents exchanged with
each other. '

Of interest were the fathers' responses to the items
that indicate "additional resources." Thirty-five percent
of mother volunteer responded to a good or great degree,
whereas 50 percent of the fathers indicated a good degree.

It seems necessary to acknowledge the finding that 44
percent of the mother volunteers indicated that the program
nurse was a source of emotional support to their own family,
to a great degree. Thirty-seven percent of the fathers
responded to this item at a good degree. No additional data
was collected that could help interpret this finding.
However, it can be speculated that a subgroup of the
volunteer parents were having stressful problems and either
the program nurse was an easily accessible resource or they
lacked other professional resources to help them cope with
their own stressors. It would be helpful to collect data on
the role functions of the program nurse to better understand

the nature of this supportive relationship.

189

Pro a ema Ef ects

Parents reported demands no higher than a moderate
level except for the "painful memories" item. Mothers and
fathers both indicated that one effect of participation
wasexperiencing painful memories of their own NICU event.
Thirty percent of the total volunteer parents indicated that
the program stimulated painful memories of their own NICU
experience as a demand at a good or great degree. Forty-six
percent of the parents experienced this demand at a moderate
level. This finding could be viewed in a positive manner,
if one considers an awareness of painful memories as an
indicator of healthy grieving. This may be especially true
if the parents who experienced this demand also perceived
one of the program rewards as working through the grief
associated with the NICU event. Further analysis of the
relationship between these items would be important.

It is important to note that more fathers indicated
that a program demand was "feeling inadequate" in the
support role. This may be related to the fathers lack of
participation in the delivery of direct support services.
It may be that the training and Supervision sessions focus
on mothers. Although the majority of parents did not
indicate demands that may threaten their own family unit,
there were a few families (7.6% at the good or great level,

11.5% at the moderate level) that did indicate program

190
demands that may affect the health of their own family
system. These families will require careful assessment and

assignment in a support program.

8 a o o a s urce an s

Overall, many parents found their program participation
to be a source of resources. A few parents identified
program demands that require attention. Of interest is the
percentage of parents who identified many resources at the
good or great degree. Since some of the parents in the
volunteer program may be identified at risk for parenting
dysfunctions, the possibility exists that a second level,
health preventive/promotive intervention may be occurring.
Thus, these descriptive findings would indicate that further

study of the "helper therapy" principle may be useful.

Vo untee Su o am 1 : Fa i E o c rs ec ive
A family ecological conceptual model was used to guide
the collection of descriptive data for this study. The
primary components of the ecological framework include the
family members as a unit, the environment in which the
family system is embedded, and the transactions between the
family system and the environment. For the purposes of this
study, the volunteer parent was studied in the context of
the family system that contained an NICU-involved child.

The environment of interest was one aspect of the parents'

191
social environment, the volunteer parent support program.
The effects of the volunteer parent's participation in the
program, conceptualized as additional resources and demands,
were identified as indicators of the volunteer parent-
support program relationship. Data from this study can be
used to further the conceptualization of the volunteer

support parent from an ecological perspective.

The Fam' Un t

Individual and family resources vary across this
particular sample of volunteer parents, yet overall, the
majority of the volunteer families have adequate family
structural resources in terms of age, number of parents,
education, employment, money, marital status and living
situation. This is 'most likely' due to the. particular
support program's approach to inviting parents to
participate in the training program and then counseling
parents as to their readiness for the direct support role.
Invitation of selected parents for the support role by
professionals may result in a more homogenous group.

No baseline data was collected to document family
process resources such . as cohesion, adaptability,
communication, and decision making skills. However, the
parents did report that the program affected some of the
family process resources such as communication and coping

skills. Resources of human capacity, affective and

192
cognitive resources were also reported as an effects of
participation. Family and parenting relationship
information, self esteem, resolution of grief are some of
the“ resources that parents indicated were influenced by
their participation. Thus, many of the resources that
parents determined were influenced positively by the program
in a positive manner are resources that affect health and
family functioning. Further testing of these relationships
would be useful. Health as a resource of the volunteer
family may be jeopardized because of the preterm birth,
neonatal illness or the stress of the NICU experience. A
majority of the mother volunteers are also at risk for
health problems when pregnant.

Of concern in this particular study would be the family
system's abilities to carry out their child nurturing role
given the risks for parenting alterations that have been
associated with the NICU experience. Studies reported in
the literature review suggested potential risk factors for
parenting alterations in families with NICU involved
children. These factors are listed below with the
percentage of parents in this study whose responses indicate
potential risk.

1. history of pregnancy complications (44%)
2. parents told baby may die (40%)

3. over 36 days hospitalization (39%)

193
4. continuing health problems in NICU
child (39%)
5. anxiety and worry about development (72%)
6. premature or low birthweight infant (73%)
Thus, it appears that as a group of the NICU volunteers
support parents have many characteristics of an at risk

group of parents for parenting alterations.

Th nv o ent 0 th V te o Pa

For the purposes of this study, few aspects of the NICU
volunteer support parent's environment were assessed. Data
was collected on the mother's perception of the availability
of environmental support by other parents' during her own
NICU experience. Most of the parents in the volunteer
sample did not have access to a volunteer support parent
themselves. Many of the parents have indicated to the
program coordinator nurse that it was the lack of just such
a resource that stimulated them to participate in the
program. No reason was given for the 28% of parents who
were offered a support parent and refused. It appears that
for this group of parents, it was more likely the lack of
such a resource that motivated participation, versus a
positive support experience of their own. Again, the
difficulty of the early caretaking experiences reported by
study families was probably not anticipated by the parents

during the infant's hospitalization, when parents are

194
traditionally asked if they would like a support parent.

The report of early caretaking difficulties for the
majority of the volunteer families does raise the issue of
the. availability and accessability of other environmental
resources during this period. Of concern is whether the
current health care system is adequately addressing the
needs of the NICU family after the infant is discharged.
The fact that many parents felt that an effect of the
program was the acquisition of parenting and family
information, sensitive to the realities of the preterm birth
and parenting experience, may also indicate a lack of such
resources in the parent's usual environment.

Although an extensive assessment of environmental
resources and demands currently affecting the volunteer
families was not included in this limited descriptive study,
some environmental stressors are of note. Many of the
families reported normative or situational stressors common
to young families, such as job change. or job loss,
difficulties with parents, illness in significant others,
and moving. Seven families identified an overlap of four to
six common family stressors that occurred during the twenty
month period of participation.

The NICU support program was viewed as having three
major social aspects, the parents relationship with the
program nurse, with other volunteer parents, and with new

NICU families. Although these aspects of the parents'

195
environment were not directly assessed, information from the
effects of participation questionnaire does indicate some
information on the nature of these relationships. Forty
percent of the mothers indicated that the program nurse was
resource for support for their own families concerns at a
great degree. Although the remainder of the families did
not use this resource in such a manner, it appears to be an
important resource for a select group of volunteer parents.
Many of the items that were identified by volunteer parents
as additional resources, such as parenting information
resources, were also intercorrelated with the "support from
other volunteer parents" item. Fathers seemed to see the
program as a resource that gave them information to link

with other resources for their own families.

Transa t o s: Vo eer ents a d the Su o P o m

An assumption was made in the conceptual framework of
the study that the family and environment change over time
and that the linkages that connect them must be continuously
monitored, so that effects of one on the other can be
measured and controlled. Thus, transactions between the
support program and the volunteer parents were
conceptualized as program resources and demands in order to
assess the effects of the program on the volunteer. The
nature of the relationship for most parents is that the

program provides more resources but also makes some demands.

196
However, there are a few families that are stressed by
aspects of program participation. What is not known from
this limited study is the "fit" between the demands and
resources for an individual family. It is the fit, defined
as the discrepancy between the demands and the resources,
that ultimately determines the family system's abilities to
grow and change, maintain or diminish the family as a

functional unit (Melson, 1980).

Summ C s o s: s

The purpose of this descriptive study of volunteer
support parents was conducted to identify and describe
important variables for future study. One of the primary
goals of exploratory and descriptive studies, in content
areas where little is known, is to describe, name or
characterize a phenomenon, situation or event in order to
gain familiarity with it or achieve new insights(Wilson,
1985). An additional goal was to examine an instrument that
was developed to assess the effects of parent volunteer
program participation. Suggestions for further development
of the effects of participation scale will be described.

Selected variables will be analyzed for future research.

Effegps of Participation Scale

A scale was constructed to measure parent volunteers

perceived effects of participation in a NICU support

197
program. Effects were conceptualized as an increase in
program resources or demands. An alpha coefficient
statistic was used as a measure of reliability. The total
scale alpha was .90, the resources subscale, .90, and the
demands subscales, .81.

Further development of the effects of participation
scale could be pursued, using the following strategies. The
effects of participation scale can be used with other
volunteer parent groups to further test the reliability of
the scale. Strategies to decrease response sets, such as
carelessness, social desirability, acquiescence, and
extremity of response, could be used (Topf, 1986) .
Relationships between the effects themselves could also be
researched.

Although 37 percent of the volunteer parents indicated
that the support program resources equaled demands, and 12
percent responded that the program had more demands than
resources, few demands were distinguished using the scale.
Therefore, it seems that further work would be useful on
delineating the demands of the parent support role. Perhaps
qualitative methodologies would be useful in conducting a
small descriptive study of support role demands.

In order to further study the volunteer parent's
effects of participation in the support program, it would be
helpful to be able to gather baseline data on volunteers

prior to their beginning the program. Such'variables as

198

social support, parenting difficulties, motivation for
volunteering, and work status may be of interest. Some of
the items that were assessed on the effects scale could also
be . tested using other measures to assist in the
interpretation of the data. An example of this would be to
measure self esteem on a standardized measure before
entering the program and then at periodic times across the
volunteers career. .

Although the parents indicated that they received
resources from participating in the program, it is not clear
which aspect of the program contribute to the acquisition of
the resources. It would be useful to know the contributions
of the nurse, other volunteer parents and the new NICU
parents to the reported effects.

Relationships between the parents' level of involvement
and the effects of resources and demands could be tested
with the scale. Do parents with high levels of involvement
yield high resources or high demands? Do parents with low
levels of direct family activity, yet high program
activities yield high or low resources? Understanding these
relationships would be helpful to those who are designing

the support intervention.

Recommendations of Further Research
The majority of research that relates to NICU families

is being conducted by those researchers who are interested

199

in the health and developmental outcomes of preterm infants,
not family related outcomes. Although most researchers do
view mother-child interaction as a factor in the child's
development, current research would suggest that this
interaction occurs in isolation. The findings of this study
bring to attention the need for research on the impact of
the NICU experience on all family members. This research
must be comprehensive enough to include the ecological
context of the NICU parent's parenting behavior.
Additionally, the parents' and the siblings' own growth and
development, as influenced by the caretaking
responsibilities of the. preterm infant, would be an
important area of concern.

The number of parents who indicated that participating
in the program helped them work through the grief process
associated with their own NICU experience seems to indicate
a much longer period of resolving the losses associated with
preterm. birth than is currently’ expectedm ZLongitudinal
studies that could track phases of this adjustment and then
subsequently test relationships between the phases of grief,
parent behaviors and child and family outcomes would be
useful to family health care providers.

The number of parents that indicated infant and child
caretaking difficulties and also described the program as
providing parenting and family information raises questions
regarding the .availability' and. accessability of

200

environmental resources to this sample of parents. If the
infant's caretaking demands consume great amounts of the
parents energy resources, it is likely that the task of
transacting with a variety of health and educational systems
to obtain resources is very likely overwhelming to parents.
The process of parental transacting with parenting resources
may be a rich field of further study.

The role function of clinical nurse specialist working
with high risk parents in a variety of health care services
has not been well described or researched in terms of the
families health outcomes. It is difficult then to
realistically secure the financial resources needed to
support such a nursing role. Descriptive studies of nursing
functions in such a role would be useful. Additionally,
further development of the construct, parenting alterations,
as proposed by the North. American. Conference Group on
Nursing Diagnosis, would be important (Barnard, 1986).
Further development of reliable assessment tools for parent-
child interactions, such as the Barnard NCAST feeding and
teaching scales, would be useful (1982).

In summary, an analysis of the study data indicate the
following areas for further research:

1. Further testing of the perceived effects of
support program participation scale.

2. The experience of NICU parents during the
immediate post discharge period and the
preschool years, from a holistic family
perspective versus the more narrow focus on the
child or the maternal-child interaction.

201

3. Focused research on the phases of grieving and
psychosocial adjustment for parents of high risk
children that occur post hospital discharge and
the interaction of such phases on parenting
behavior.

4. An analysis of accessability, acceptability, and
cost effectiveness of current parenting support
interventions and resources and family and child
outcomes of such services.

5. The further exploration of the fit of support
program resources and demands and the
relationship with individual family systems.

6. An analysis of nursing functions and roles in
delivering care to those families at risk for
parenting alterations.

It is important to note, that although the conceptual
focus of the study was the volunteer parent in the context
of the family, the researcher's resources limited the
collection of data to individual family members. The
individual's perception do not represent the family. Paper
and pencil scales, frequently used to measure aspects of the
family, are subject to influences of social desirability and
the need of the family to save face in public situations
(Fischer, 1982). Perhaps this notion is connected in some

way to the parent's minimizing program demands.

Su a and Conclusions: Nursin Practice an Educat on

The focus of nursing is the diagnosis and treatment of
human responses to actual and potential health problems (ANA
Social Policy Statement, 1980). Human health can be viewed,

consistent with an ecological perspective, as the result of

202

the interaction between individuals and their environment
(Rose and Killien, 1983). The Clinical Nurse Specialist in
advanced practice is charged with identifying those persons
and. populations who may have special difficulty as they
interact with their particular environment (ANA Social
Policy Statement, 1980). In addition to identifying such
persons and populations, it is the responsibility of the
Clinical Nurse Specialist to engage in interprofessional
collaboration and consultation in planning and evaluating
health care programs for those at risk.

One population that has been identified at risk, are
those infants who were born prematurely or suffering from
neonatal or congenital illness and are hospitalized in a
neonatal intensive care unit. Nurses and others have
supported the development of NICU parent-to-parent support
programs, in order to increase parents access to supportive
persons and additional information and skills necessary to
parent an NICU-involved child. Such programs are structured
to match new families whose infants are currently in the
NICU, with volunteer parents who have had NICU experience in
the past and are willing to support new families. However,
an ecological perspective would support the notion that what
occurs between the volunteer NICU support program, is
transactional in nature. That is, the volunteer parents
affect the NICU support program and participation in the

NICU program affects the volunteer parents. To ignore this

203
complex relationship and. only regard. the health of the
family whose child is currently in the NICU at most, limits
the potential of the intervention to enhance the health and
well being of all participants: at worst, it may jeopardize
further the health and well being of the volunteer parents
and the NICU parent.

Implications that can be drawn from the findings of
this study of NICU volunteer support parents will be
organized around the central components of Robert's nursing
model (1980). Robert's nursing model is composed of three
components: 1) client needs, 2) needs assessment, and 3)
nursing responses. Nursing, as a profession, has access to
parents whose children were hospitalized in the NICU in a
variety of health care settings, such as primary care
clinics, outpatient developmental follow up clinics,
community and home health care agencies, school health
programs and others. Although the implications for clinical
practice and education will need. to ibe adapted to the
particular setting in which the Clinical Nurse Specialist is
functioning, many of the implications are general in nature
and address the needs of post. NICU children. and their

families regardless of setting.

Client Needs

Four levels of client” needs are identified in the

Roberts model: 1) current needs met, 2) behaviors likely to

204

lead to future problems, some recognized by the nurse but
not by the client, 3) current needs not being met, and 4)
unmet needs threaten survival. An analysis of level 2 and 3
client needs seem to be the most appropriate levels of needs
for the focus of this analysis. Therefore, findings from
the study that indicate behaviors likely to lead to future
problems and current needs that are not being met will be
delineated.

Descriptive data from the volunteer parent's own NICU
experience indicate that the immediate post NICU discharge
period was particularly stressful. Feeding and infant
caretaking are problems that were especially difficult for
this group of parents. Recently, there has been a surge of
research on caretaking and developmental intervention for
the preterm infant. However, it may be that such
information is not reaching parents, after their infant has
been discharged from the unit.

Mothers also indicated that they had current socio-
behavioral and developmental concerns about their. NICU
child, such as hyperactivity, school related problems and
overdependence. Many mothers indicated several of these
concerns. A majority of parents also indicated that
an effect of participation in the program was gaining
information on parenting and family relationships. Perhaps
there is a need for information about developmental and

parenting concerns that are associated with children who

205
have suffered life threatening illnesses. Additionally,
parents ‘may not. have resources that are accessible and
acceptable to learn about ways in which families cope with
stress.

Some volunteer parents also indicated that their
children continue to have health problems at the present
time, that they felt ‘were related. to the child's NICU
experience. It is important to note that no data was
collected in this study to support whether the health
concerns identified by the mothers are being adequately
addressed. The fact that a subset of the volunteer parents
used the program nurse coordinator for emotional support for
their own family problems to a great degree, raises concern
about other unmet needs. No data was collected to interpret
this information.

It is interesting to also note that the majority of the
parent's own NICU experiences occurred approximately three
to eight years prior to their participation in the program.
Yet, most of the parents indicated that working through
their own feelings about their NICU experience was a program
effect- Ilt is not known how parents grieve and adjust to
their early NICU experience. An analysis of the data
suggest that parents may have a need to re-work their
experience and gain a new perspective.

There are some volunteer parents who perceive that the

program demands are more than or equal to program resources.

206
There may be a need for professional support and supervision
in order to help volunteers in balancing program demands and
their own family needs. Increased program demands may
reflect that volunteer parents are assuming greater
responsibility for supporting the new NICU family than is

appropriate for non-professional helpers.

Needs Assessment

The review of literature supports the notion that those
parents whose children were previously in the NICU, may be
at risk for parenting alterations. One of the most
important implications of this study, is the increased
awareness that those parents whose children were previously
in the NICU and volunteer for a support parent role, may
also be at risk for parenting alterations. The North
America Conference Group on Nursing Diagnosis considers
parenting alterations to be the inability, for whatever
reasons, of providing an environment that promotes optimum
growth and development (1984).

Periodic, systematic assessment of the NICU-child,
parent-child. dyads and. the family 'unit is an. important
function of the clinical nurse specialist in advanced
practice. Risk factors or contributing factors to parenting
alterations, such as prematurity, family conflict, frequent
moves, unemployment and. others should. be. assessed.

Characteristics of parenting disorders, including

207
inappropriate attachment behavior, inadequate or
inappropriate stimulation, verbalized frustration or a sense
of inadequacy in the parenting role, must also be assessed.
There are available, systemized tools that can be used
for such an assessment. Although not ideal, family
assessment paper and pencil measures, such as FACES (Olson
and Sprenkle, 1983) , Feetham Family Functioning (Feetham,
1980), and the Family .APGAR. (Smilkstein, 1979). These
measures are limited by the fact that they are self report
measures and most have not been tested for clinical
validity. Measures of parent-infant interaction that
consider both the responses of the caretaker to the infant,
but likewise the response of the infant to the caretaker,
are also available. The Barnard feeding and teaching scales
are examples of such measures that are currently available
and are tested instruments (Barnard, 1979) . These scales
use direct observation of a feeding situation or an activity
where the mother teaches the infant an age appropriate task.
Given the difficulties the study mothers had with feeding
in the early months post discharge, feeding observations
would be important and may also strengthen the clinical
nurse specialist' knowledge Ibase on. feeding"problems in
preterm infants.
The clinical nurse specialist may not be in a setting
where such a thorough parent-infant assessment can be

accomplished. However, there are referral agencies that can

208

be used for such an assessment. Community health nurses are
often trained in systematic parent-infant assessment
measures and can usually gain access to the parent in the
home environment. Infant Mental Health Specialist may also
be a resource. If an assessment is done in the home, the
Caldwell, Home Observation of the Environment-Home
(Caldwell, 1978) could be used to collect information on the
home environment.

Those parents who volunteer for the NICU support role
require careful assessment of their parenting beliefs and
abilities. The needs of individual NICU volunteer parents
should be carefully assessed prior to participation in the
support program, after the completion of the preparation
sessions, and at a series of periodic screening times across
the volunteer's career in order to further assess the
demands and resources of the role on the volunteer. The
Clinical Nurse Specialist is responsible for assessing
volunteer families and determining the frequency of such
assessment. The study findings indicate a wide variation in
involvement time. Some families responded. that. program
demands equal resources or demands greater than resources.
Thus some volunteer parents may have difficulty' making
appropriate decisions about their program involvement.

Although professionally initiated and conducted
assessments are necessary, the use of guided self asSessment

techniques may be a useful strategy. These methods would be

209

particularly adaptable to group interventions with NICU
families. The volunteer training program could include an
experiential component for parents that includes thinking
and reflecting about their won NICU experiences and how that
may affect their support parent role. Specific group
activities can designed to stimulate the parents in
remembering thoughts and feelings from their own
experiences. The sharing of such varied family experiences
could help parents begin to see how families use different
ways of coping with the NICU event. Such activities would
also give the clinical nurse specialist a chance to observe
the support parents interact with other parents and
determine how self aware they are of their own and other's
behavior. Such techniques are consistent with the
philosophical assumptions of Robert's model that include
the jprocesses of“ mutuality' between. client and. nurse in
identifying client needs. New information in the training
program can also raise parents awareness of .needs. Their
parents can seek; out necessary’ resources to :meet these
needs.

Although many fathers cannot participate in the actual
support role, or may have other volunteer interests, it
would be useful for the family and the nurse to have both
parents participate in the support parent training sessions.
This would give the nurse the opportunity to assess the

family of the volunteer from a broader perspective and also

, 210
enable the nurse to establish relationships with more than
one family member. Periodic family picnics or other social
events for the volunteer families and their children would
also allow informal assessment of family needs.

The study findings suggest that particular times may be
of importance in evaluating NICU parents and volunteers.
The period of predischarge from the NICU and post discharge
period at home appear to need more attention. Itcannot be
determined from this study, if parents concerns about their
NICU involved child at the present time are being met.
However, mothers in the study, many with preschool and
school age children, reported numerous concerns. Although
hospital- based, NICU follow up developmental clinics offer

assessment to selected families, they are not well utilized.

Nurs n es 0 ses

Robert's identifies four nursing responses to the
particular level of client or family needs. These include:
1) protective, 2) collaborative, 3) educative-facilitative,
and 4) prospective. The protective response would be
appropriate when the volunteer parent seeks out the nurse
for a health care crisis that demands immediate attention.
This type of response would most likely occur in the NICU
during hospitalization, but may also occur in primary care

settings, or a support program setting. This response will

211
not be developed for the purposes of this analysis, since
the focus of this research is the description of an at risk
population.

The collaborative response considers that both the
client and the nurse share responsibility for identifying
needs and for finding ways of meeting those needs. This
response is appropriate when the volunteer parent brings a
health concern to the program nurse. In a primary or acute
care setting, the clinical nurse specialist must have the.
expertise to address the unique caretaking, developmental
and health concerns of NICU infants. If other role
functions prevent the nurse from having such expertise, the
clinical nurse specialist must be able to refer the parents
to other acceptable and accessible health care resources.

The clinical nurse specialist, who functions in a
direct volunteer support program role, can make clear to
parents that the program nurse is as committed to the health
of the volunteer and family, as to the new NICU family that
is being supported. The nurse needs to explain the limits
of availability to the volunteers and how referrals can be

handled for their problems.

The educative-facilitative response is appropriate for
clients that may not recognize practices that are likely to
lead to problems in the future or have unmet needs.

Whatever the clinical nurse specialist practice setting,

212

some of the self assessment strategies, identified
previously, may be used. In a primary care setting, parents
may find it helpful to record. their infant's activities and
their parenting responses for a selected period of time.
The NCAST (Nursing Child Assessment Satellite Training)
Sleep-Activity Record is one way of recording such data
(Barnard, 1986). This is an excellent mechanism to help
parents learn to identify family and infant needs. Although
designed for infants, the record can be used for any age
child, and any behavior that the parent wishes to monitor
over time. Parent's responses to the child's needs are also
recorded, so an estimation of parent's activities can also
be made.

One way that the educative-facilitative responses could
be operationalized within the volunteer support program is
through the training and supervision sessions. Group
activities can be designed to give the parents the content
of family and parenting coping skills. Exercises can be
designed to have the volunteer families participate in self
assessment and needs identification activities. Individual
conferences with the nurse and the support parents can be
scheduled on a periodic basis, so the parents are able to
have one-to-one contact with the nurse. If parent's
identify a need, appropriate referral can be made by the
clinical nurse specialist, if the program role does not

specify direct intervention with volunteer parents. The

213
support program training and supervision group meetings of
the study volunteer parents may have served this function
for this sample population, but no data was collected to
link the parents reported effects of participation with
specific program activities.

The prospective response is used by the clinical nurse
specialist to anticipate needs usually based on growth and
developmental changes in the client or family. The clinical
nurse specialist, in a primary care setting, could increase
attention to the parent's concerns about caretaking and
development in the preterm infant. One approach that may be
useful is the use of a group approach in well child care for
these infants. Osborn (1981) reported a controlled study
that examined the use of groups for well child care in an
office-based practice. Experimental infant visits consisted
of a 45 minute group discussion followed by brief individual
physical examinations. An analysis of the content of the
experimental visits indicated that less time was spent
discussing physical aspects of care while more time was
spent discussing personal issues in the infant's daily care.
Mother's questions included family stress, the father's role
in child. rearing, sibling interaction. and :maternal
depression. This may be a worthwhile strategy to use with
first time, preterm. birth. mothers that ‘would. afford an
opportunity' for' parents to use each other’ as parenting

resources during the challenging first year of life.

214

Another way to offer such service would be through the
hospital- based developmental follow-up clinic. A model
project that investigated the use of a pediatric nurse
practitioner in a primary care setting versus traditional
physician visits indicated promising results(Wingert, et a1.
1980) . Seventy one percent of the PNP assigned children
reported for their follow up appointments and were examined
regularly for the twelve month study period, versus 36% in
the traditional care group. The nursing care described in
the study is similar to descriptions of nursing functions in
advanced nursing practice roles.

The clinical nurse specialist who is working directly
with volunteer NICU parents may attempt to maximize the
volunteer group rapport and the opportunities for
prospective responses within the structure of volunteer
parent group meetings. Periodically setting aside a group
session for the volunteers to identify their concerns about
the future and how their parenting needs may change would be
useful. Taking on the responsibility for setting up
programs to meet those needs would be appropriate.

Clinical implications that can be derived from an
analysis of this descriptive study of NICU volunteer support
parents, also stimulate further thinking on how nursing
educators might better prepare practitioners to provide such
services directly or work in collaborative relationships to

make such services available.

215

This study of NICU volunteer parents draws attention to
the broad category of nursing diagnosis, parenting
alterations. At this. point in 'time, expertise in ‘the
diagnoses and treatment of parenting alterations ,
particularly risk factors and potential parenting
alterations, are not being comprehensively developed by
other disciplines. While other health care providers have
shown interest in the more severe forms of parenting
alterations, health preventive and promotive strategies
remain underdeveloped and untested. It is suggested that
nursing educators prepare nurses, especially those in
advance practice roles, to assess and treat both potential
and actual parenting alterations. This will necessitate
further development of the nursing diagnosis, parenting
alterations, and clinical studies to evaluate one-to-one and
parent group interventions.

In summary, nursing implications that can be derived
from the findings of this descriptive study were identified
using Robert's nursing model as a framework for guiding the
selection and organization of these implications. The
identification of parent volunteers perceptions of program
effects suggests that the provision of such a program may be
a unique way for nurses and others to affect the volunteer
parent's health. Antonovsky, using an ecological
perspective, maintains that health is to a great extent

dependent on a good sense of coherence(l984). Coherence is

216

described as a sense that life is comprehensible (makes
sense and has some order and organization), manageable
(predictable and controllable by oneself or others that one
trusts) and meaningful. Hancock offered the following
suggestions as to how to assist others to create a sense of
coherence: imbuing people with a sense of personal self-
worth, a sense of being needed or loved, an ability to
influence and control their own environment, and an ability
to manage their own problems(1985) . Thus, participation in
the volunteer support program creates an opportunity for
parents who may be at risk to potentiate their health.
Likewise, the opportunity for diminished health may be
present for a small subset of the parents.

Although the development of health promotive and
preventive nursing interventions for at risk NICU parents
and volunteer support parents is an exciting venture, such
interventions must also be considered in the ecological
context in which the interventions will be provided. The
economic realities of the current health care system may
preclude the funding of nursing resources for interventions
such as those described previously. In a period of economic
constraints and marketing strategies to enhance the image of
health agencies, parent-to-parent support groups are often
developed to increase the agencies community good will.
However, these programs are often underfunded, with limited

professional staff available to volunteer parents and the

217

NICU parents after discharge. Study findings would suggest
that NICU the volunteer parents may have unmet health care
needs with additional parenting stressors. Thus, the
clinical nurse specialist has the responsibility to protect
the health and well being of all the parents who participate
in the program. The position the nurse assumes, in relation
to such a program, could be many, such as administrative,
consultant, progrmm coordinator or even primary care giver
to parents who are participating in the program. Whatever
the specific role of the nurse, of importance is the
clinical nurse specialists' responsibility to advocate for
adequate program resources, especially professional staff
for the preparation, support and supervision of the
volunteers parents and their NICU families postdischarge.

Clinical nursing research is needed to document the
efficiency, cost effectiveness and improved parent and
family outcomes of parent-to-parent support interventions
with populations at risk. Creative means for increasing
accessability and acceptability of parenting interventions
will be necessary to attract those parents most at risk for
parenting alterations. An NICU volunteer parent-to-parent
support program, where parents are carefully assessed by
professional staff for program resources and demands, may be
an effective intervention in addressing actual or potential

parenting alterations. Further program evaluation of both

218
processes and outcomes are necessary to safeguard that the

intervention does not inadvertently stress family health.

Conglusigg
In this chapter, the findings of a descriptive study of

NICU volunteer support parents were summarized and analyzed.

Study findings support the notion that participation in a

NICU parent-to-parent support program may increase parent

resources and demands. The family ecological conceptual

model was utilized to focus the collection and analysis of

descriptive data. Recommendations for further research,

nursing practice and education were presented.

 

APPENDICES

 

APPENDIX A
RISK FACTORS ,
ASSOCIATED WITH BIRTH RATE .

 

II.

Source:

219

Principal Risk Factors (or Low Birthweight

Demographic Risks

A. Age (less than l7: over )4)
8. Race (black)

C. Low socioecononic status

0. Unmarried

8. Low level of education IV.

Hedical Risks Predating Pregnancy
A. Parity (Q or sore than 4)

8. Low weight for height

C. Genitourinary anosalies/surgery
0. Selected diseases such as
diabetes, chronic hypertension
Noni-suns status for selected
infections such as rubella

Poor obstetric history, including
previous low birthweight infant.
sultiple spontaneous abortions
Haternal genetic factors (such as
low Internal weight at

own birth)

P.

VI.

Medical Risks in Current Pregnancy
A. Hultiple pregnancy

8. Poor weight gain

C. Short interpregnancy interval

0. Hypotension

E. Hypertension/preeclaspsia/toxenia
P. Selected infections such as
sylptosatic bacteriurie, rubella.
and cytosegalovirus

Pirst or second trisester bleeding
Placental probless such as
placenta previe, abruptio
~placentae

Hyperesesis . .
Oligohydrasnios/polyhydramnios
Anesia/abnorssl hemoglobin
Isoisnunixation

Petal anosalies

I.
J.
K.
L.
H.

Preventing Low Birthweight.
Academy Press, 1985.

N. incompetent cervix

.o, spontaneous preseture rupture

of sesbranes

Behavioral and Environ-Intel Risks
A. Sucking .

a. Poor nutritional status

C. Alcohol and other substance abuse
0. Des exposure and other toxic
exposures, including occupa-
tional hazards

B. High altitude

Iealth Care lists

A. Absent or.inadeguate prenatal
care

I. iatrogenic presaturity

Evolving Concepts of Risk
Stress, physical and psychosocial

A.
s. Uterine irritability
C. Events triggering uterine

contractions
Cervical changes detected before
onset of labor

Selected infections such as
sycoplassa and Chlasydie
trachosatis

inadequate plasIa volume

expansion
Progesterone deficiency

P.

Committee to Study the Prevention of Low Birthweight.
Washington, D.C.:

National

 

APPENDIX B
STUDY INSTRUMENTS
Design Background
NICU Historical-Family Background
Volunteer Parent (Effects Scale)
Level of Involvement (Activity Survey)

 

220

NlCU/i‘i‘i’ Project
Code Number

 

Male Female

Date

 

Parents' Questionnaire - i - Background information

For our study. it would be helpful to‘ltnow something about the background of the parents
who are participating. Any information that is shared on this form will be considered con-

fidential by the project staff and will be identified by code number only.

Personal Background information

 

 

 

 

 

 

la. Birthdate b. Age
c. Race: White ~ Black Hispanic Oriental
Native American Other
iPlease specify)

 

d. Marital Status: Married Single Divorced Widowed

Bducition/Occupation

2a. What is the highest grade in school that you completed!
c. What kind of school are you enrolled

 

b. Are you enrolled in any school now!.
c. What kind of school are you enrolled in!

3.. Do you presently have a job! b. if no. reason!
d. Full-time or part-time!

c. if yes. what is your job!
c. How long have you been in your present job! e. Occupation!
(if different from present job)

 

 

 

For mothers:
3. Do you plan to return to work (or school)!

 

if yes. when!

Family income
4. What are your current sources of income!

(Please check all that apply)

employment of baby's mother d. welfare payments

I.
b. employment of baby's father e. Social Security
c. supported by parents f. Other (please specify)

5. Will these sources change now that the baby is born! if yes. please explain:

 

 

221

6. Which category of tatai family income best describes your family's income!

Under $5.000/year ($4lS/month)

$5.000 - $l0.000/year ($4l6 - SSJJ/month)

$l0.00l - $l$.000/yesr ($834 - SilSO/month)

$l$.00l-$25.000/year (SIZSI - SZOBJ/month)

$25.00l - $35,000/year ($2084 -'$29|6/month)
$35.00l and over/year ($29l7 and over/month)

a
b
c.
d.
e.
f.

 

7. How many people are supported on this income! (Please specify who)

8. Do you have health insurance! Describe: (Blue Cross/Blue Shield. Medicaid. etc.)

Residence information

9. Present living situation: Do you:

I. own a home!

b. rent!
c. live with someone else!

 

l0. Who else lives in your household with you!

ll. Do you have any plans to move!

a. Reason for move:
b. When!

l2. if. we need to contact you in the future. who will know your new address if you have.

moved .'

Name

 

Relationship

Apt. I

 

Street

 

City. State

 

Zip Telephone (- )

Return this to the Hospital Coordinator when completed.

 

222

F or Mothers Only
About Your NICU Child

If more than one of your children has been hospitalized in the NICU, please use another
questionnaire so that each child's birth is described.

Code I:
Date:
W
I. Have you had difficulty in the past getting pregnant?
A. yes
— O m

2. Have you had any miscarriages?

_A. yes, if yes - __ one
_ two or more
_8. no

3. Have you had any infants die that lived over )2 hours of age

A. yes
8. no

ll. How many children have you had hospitalized in the NICU?

_A. one
_8. two
_C. three or more

5. Did you experience any prenatal complications during the pregnancy that
required you to be hospitalized, or on extended bedrest at home?

_A. yes
_8. no
" Btbz in the MCU

6. Sex of your baby?

A. male
_8. female

7. Birth weight?

A. equal to or more than 5 pounds - 8 oz. (2500 grams)

. between 4 pounds - 7 oz. and 5 pounds - 7 oz. (2499 - 2000) grams)
C. between ll pounds - 6 oz. and 3 pounds - 5 oz. (I999 - lSOO grams)
. between 3 pounds - 4 oz. and 2 pounds - 3 oz. (I499) - I000 grams)
E. equal to or less than 2 pounds - 2 oz. (999 grams)

lml

 

223

8. Number of days baby hospitalized in the NICU?
9. Was your baby transported to a regional NlCU from another hospital?

_A. yes
_B. no

if yes, did....

A. mother stay at delivering hospital

:8. mother get transported to the NICU hospital with the baby
l0. Why was your baby hospitalized in the NICU? (Check all that apply)
_A. premature (less than 40 weeks gestational age)
_B. small for gestational age
_C. respiratory distress problems
0. congenital problems
_E. other reasons (please describe)

 

 

 

I I. At on time during your baby's stay in the NICU, were you told your baby
was in danger of dying?

_A. yes

_B. no

Parents in NICU

I2.Did you have the opportunity to meet with other NICU parents while in
the hospital?

_A. yes
_B. no

l3. Were you asked if you would like to see a visiting NICU support parent?

_A. yes
_B. no

If yes, did you request to see a parent?

_A. yes
_B. no

 

224

If yes, what kind of contact did you have? (Check all that apply.)

A. telephone call

8. hospital visit

C. home visit

0. other (describe

 

 

Baby at Home

“i. What kinds of health problems did your baby still have when you went
home from the hospital? (Check all that apply and describe others)

A. apnea episodes

feeding difficulties
seizure difficulties
respiratory difficulties
hydrocephalis/shunt
heart problems

other (please describe)

 

IJJAJAJ

 

l5. During the first three months that you were taking care of your baby at
home, how would you rate your baby's caretaking:

hard average easy
I 2 3 4 S 6 7

 

l6. When you first started training for the NICU/P9P program (November,
I980 how long had it been since your baby was discharged from the
NICU?

A. less than l2 months
. ll - 2 years
. 3 - 5 years

D. over 5 years

Your NtCUTChild Now
' l7. How old is your NICU-involved child now?
_years _months

l8. Does your NICU-child have any continuing health problems that you feel
are related to the NICU experience?

_A. yes
_B. no

225

If yes, please describe:

 

 

 

l9. To what degree do you still wonder whether your NICU child will "be all
right?"

Not at all Minimally Moderately A Good Deal A great deal

20. Have you ever been worried about any of the following concerns in your
NICU child?

hyperactive behavior

shyness

difficult to discipline (setting limits on behavior)

school related difficulties

overly dependent on parents

lagging behind in development from other children of the same
age

. seems to be sick more often than other children

L lrlglglplylp

2|.Please list below the age and sex of each member of your family (do not
use any identifying names). F amily members are those persons related to
you as your spouse or as natural born or adopted children. Include
deceased children as family members (record date of death under the
category 'age'. Indicate your relationship to each.

Family Members

Relationship
522 15.2 £22
I.
2.
3.
a.
S.
6.

 

226

22. The following is a list of things that happen to people. Please indicate if
your family has experienced any of them since you have been
participating in the parent support program:

a. Loss of job

_l. Mother _2. F other _3. Both _a. Neither
b. Change of job

_l. Mother __2. Father _3. Both _4. Neither
c. Moving

_l. Yes
_2. Na

d. Begining School

_I . Yes - Which family member (write in)
_2. No

e. Finishing School

_I . Yes - Which family member (write in)
_2. M

f. Death of a significant person

_I . Yes - Which family member (write in)
_2. No

9. Illness of a significant person

_I. Yes - Which family member (write in)
_2. m

h. Problems with parents

_l. Yes
_2. No

i. Any other

 

_l. Yes - (specify)

 

227

Code ll:
Date:

VOLWTEER PARENT GLESTIOMAIRE

Volunteer parents frequently tell program staff that participating in the Neonatal
Intensive Care Unit/Positive Parenting Program (NlCU/PPP) has affected their own lives
in many different ways. Listed below are statements of possible effects of a parent's
participation in a volunteer support program. For each statement, please indicate to what

degree you have experienced any of the following effects.

 

As a result of participating in the NICU/PPP training and support program....

I. I find more ways to cope with my own problems.

 

Not at All Minimally Moderately A Good Deal A Great Deal

2. I feel better about myself as a person.

Not at All Minimally Moderately A Good Deal A Great Deal
3. I worry more about my own family situation.

Not at All Minimally Moderately A Good Deal A Great Deal

h. I am able to find more resources (such as health care services, financial resource
aid, child care alternatives) that could help my own family.

Not at All Minimally Moderately A Good Deal A Great Deal
5. l feel emotionally drained because of my NICU family's problems.
Not at All Minimally Moderately A Good Deal A Great Deal

6. I am more skilled in talking and listening to others.

Not at All Minimally Moderately A Good Deal A Great Deal

 

228

Code II

As a result of participating in the NlCU/PPP training and support program...

7.

I have been able to work through my o_w_r1 feelings about my NICU experience.
Not at All Minimially Moderately A Good Deal A Great Deal

I have gotten "energized" helping a new NICU family.

Not at All Minimally Moderately A Good Deal A Great Deal

l have felt good about ”giving” help because I have received help.

Not at All Minimally Moderately A Good Deal A Great Deal

l have been able to gain valuable work experience for future work or career goals.
Not at All Minimally Moderately A Good Deal A Great Deal

l have felt inadequate in my ability to help the NICU families.

Not at All Minimally Moderately A Good Deal A Great Deal

l have gained confidence in my abilities to parent my own children.

Not at All Minimally Moderately A Good Deal A Great Deal

l have felt more stressed in meeting my own family's needs.

Not at All Minimally Moderately A Good Deal A Great Deal

l have had less energy for my own family.

Not at All Minimally Moderately A Good Deal A Great Deal

 

 

229

Code ll:

As a result of participating in the NlCU/PPP training and support program....

I S. I have gained valuable information about parenting and family relationships.
Not at All Minimally Moderately A Good Deal A (Great Deal
l 6. l have gained support from other volunteer parents.
Not at All Minimally Moderately A Good Deal A Great Deal
l 7. l have experienced a sense of involvement in worthwhile work.
Not at All Minimally Moderately A Good Deal A Great Deal
l8. l have experienced painful memories of my own NICU experience. '
Not at All Minimally Moderately A Good Deal A Great Deal
I9. I have experienced stress in my relationship with my spouse because of my support
work.
Not at All Minimally Moderately A Good Deal A Great Deal
20. l have experienced financial strain from the expenses of volunteering in the support
program
Not at All Minimally Moderately A Good Deal A Great Deal
2|. l have received emotional support from the program nurse in coping with stresses
that my own family has experienced.
Not at All Minimally Moderately A Good Deal A Great Deal
OPTIONAL COMMENT:

If you feel that you may not have understood the meaning of any of the above items,
please identify the item by number and indicate your concerns. This will help us develop
better ways to ask volunteer parents such questions.

 

 

230

Code If:

22. Are there other ways that you feel you and your family may have been affected by
your participation in the NlCU/PPP program?

Please list any ways that you feel your participation in the program has made things
BETTER.

For you

For your family

Please list any ways that you feel your participation in the program has made things
'more difficult.

For you

For your family

 

231

Code If:

Participating in the NICU/PPP program makes demands on a volunteer's own resources,
and yet some volunteers feel there are new resources or benefits that come from being a
support parent.

23. Overall how would you rate the program demands versus the program benefits
related to your participation in the program?

_A. more benefits than demands

_B. equal benefits and demands
_C. more demands than benefits

THAM< YOU FOR FILLING OUT THIS GIESTIONNIAIRE!

 

 

 

232

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I on
..
.o
. .m
.o
. .n a... .soooo
.~ o.
._ a... so..:
no.» . .oo_ooooo. on._ ....u on.» co..¢.oooou on._ so...» u:.. .o...» .oooeoo one: oo..o.
«Io—)1... 33:33 285 5... 393 I3: .333: .21.: 5:1: ml:
.38 35° .9 ~ .eouLe h be ~ Lo h co :3

 

 

Sui 55.3 2:3...

1'

"Como-g9 Us 00

Cog: 6.. 33:30»

233

If wuavere able to participate in havine (rouns of parents in your hone or
ncloin another volunteer' a hose. olease answer the following auestions:

lbw eanv erouo aeetines were held in your own hose?
Nuaber of Other

Number.of Parents Attending} Volunteers Attending

Agate of HeatinJ

.a e! e.’ -'\%'.-w

HOM‘MNp
0 O eee .

 

'—
.00“

lf'you did not have any group seetings in your hose. did you help another
volunteer host a seating!

_‘e Y.‘ ;—'.e. "0

if yes, how.aany hose seatings did you attend!

About the PPP/NKGJ training program

 

Training sessions were held

until flarch
able to attend:

volunteers tron November l984

for
the sessions that you were are

l983. Please check

_l.‘ introductory session<$unday, :5 hours. dinner)
:2. About tanilies, discussion on feelings of grief

__:3. Parenting in the NICU( discussion)

___4. premature babies

___5} all about the NICU(with Harcia Eager)

___6. the volunteer support role

___7; developing helping, supportive relationships

___8. program responsibilities of volunteers

“ 9. more on listening skills

Support and supervision ueetings

are held monthly for volunteer
How nany meetings were you able to attend tron April

Parents.
1983 until June 1986
1983
l986
_-April .
__Hay __Jan
,__June» __Feb
__Jul y (or enie ) “flare"
“No __Mr u
_.Hay<pienic)
_-June

_Siept
:_Oct. (Joint ueeting with NICU families)

_Nov.
“Dec . (dinner party)

APPENDIX C
HUMAN SUBJECTS REVIEW
CONSENT FORMS
LETTER TO PARTICIPANTS

 

234

MICHIGAN STATE UNIVERSITY

UNIVIZRSI‘I'Y COMMITTEE ON "SEAICN INVOiVING CAST IANSING 0 HOCIIIGAN 0 «an-teas
uumu sunnc‘rs qucamsi
ua aunmlsmnon IUILOING
Hun mam
August 18. 1986

HS. Lee Anne Roman
Institute for Family & Child Study
Home Management House Unit #2

Dear Ms. Roman:

Subject: Proposal Entitled. "Demonstration of the Perinatal
Positive Parenting Pragraa with a Subpopulation of
NICU-Involved Parents at Butterworth Hospital.
Grand Rapids, Hichiggg?

I an pleased to advise that because of the nature of the proposed research,
it was eligible for expedited review. This process has been coapleted. the
rights and uelfare of the human subjects appear to be adequately protected.
and your project is therefore approved.

You are reminded that UCRIHS approval is valid for one calendar year. If you
plan to continue this project beyond one year. please make provisions for
obtaining appropriate UCRIHS approval prior to August IS. 1987.

Any changes in procedures involving human subjects must be reviewed by the
UCRIHS prior to initiation of the change. UCRIHS oust also be notified
promptly of any problems (unexpected side effects, complaints, etc.)
involving human subjects during the course of the work.

Thank you for bringing this project to our attention. If we can be of any
future help. please do not hesitate to let us know.

Sincerely.

I

I

{L
Henry E. Bredeck
Chairman. UCRIHS

HEB/jms

cc: Dr. Robert Boger

USU is e- W Anion/Egod Woody brewpub.

235

NICU/PERINAIAL POSITIVE PARENTING
VOLUNTHER PARENT CONSHNT FORM

 

NAME:

I understand that Butterworth Hospital is sponsoring a study

about Neonatal Intensive Care Parent Support programs being
Ph.D., Director of the Institute

directed by Dr. Robert Boger.
for Family and Child Study at Michigan State University

i understand that infer-ation i gave on the NICU/Volunteer
Profile may be released to project staff in order to be in-
cluded in a descriptive study of volunteer NICU parents.

I understand that a record may be kept of information that I
.in writing with the NICU/P9P Project nurses

share verbally or
and feelings about the implementation of the

about my concerns
role, unless i specify that a particular

volunteer support
segment of informatiOn may not be used for study purposes.

I understand that I may be asked to participate in additional
interviews about my role as a volunteer support person and i

may refuse to do so at any time.

I understand that all information that I give will be treated
CONFIDENTIALLY and that my name will NOT appear on any written
records or reports.

This project has been explained to me and I understand the
explanation given.

I understand that I am under N0 obligation to participate in
this study and that if I choose NOT to participate. this will
n0t affeCt my participation in the Volunteer Support program
at Butterworth Hospital.

I understand that I am free to discontinue my participation
in the study at any time WITHOUT penalty from Butterworth

Hospital. or projeCt staff. I also understand that I may REFUSE
to answer any question asked of me. -

I can receive a summary of the

I understand that. at my request. . . .
research findings of this projecc after my participation is

completed.

 

SIGNED (Parent)

DATE

 

 

SIGNED (witness)
DATE

 

 

236

MICHIGAN STATE UNIVERSITY

 

courcc or HUMAN (COLOCY EAST uuuuc - tatCIuGAN - «auntie
INSI'IWTI )0! Hull? AND CNIU) STUDY

August ll, I986

Dear Volunteer Parents:

In January, I985, you were asked to participate in the evaluation research project of the
PPP/NICU support parent demonstration program. At that time, you signed a consent
form, giving project staff permission to.use program data that relates to volunteers, and
also to ask you some specific information about your experiences as volunteer parents. At
this time I would like to ask you additional information on your support activities. We
need to carefully document all the activities and service you have provided to the
hospital. Additionally, I would also like to ask you some questions about your own NICU
experience. In our reporting of the project, the research team would like to be able to
describe what kinds of parents volunteer for support roles and what kinds of effects
participation in the program has had on you and your family. This will help us keep the
program sensitive to the needs and concerns of volunteer parents.

Since it has been a while since you signed the orginial cement form, It is important to
remind you that all research questionnaires will be given a code number and that your
identity will only be known by myself and remain confidential. Your role as a support
parent will not be jeopardized if you chose to not participate in the evaluation. It you
have questions about the consent you have given, or any current concerns, I would be glad
to talk with you about this and can be reached at Michigan State Sl7l353-66I7 or at my

home at 5 I "655-3689.

We are planning to bring the questionnaires to the August l8 parent meeting and allocate
time near the end of the session to fill them out. If you chose not to participate or if you
are unable to attend and/or must leave the meeting early, please let me know. I will
make arrangements to mail the questionnaires to you, or omit your name from the follow-

up contact list.

I am sending this letter to all of the volunteer parents who were in the first NICU/PPP
training session. Mary has told me that some of you will not be participating in the
program this year. However, please help us by filling out the questionnaires.

We have tried to keep these questionnaires short, and feel that it should not take you very
much time to complete them. We have available help in the last weeks of August, and

would appreciate your efforts to fill out the questionnaires as soon as possible.

Thanks for considering our request for this additional information. I have missed seeing
you all in the hospital, but my deadlines for data analysis and report writing are fast
approaching. I hope you have managed some time to enjoy the surnmer and look forward
to seeing you August l8!

Sincerely,

Lee Anne Roman, R.N., M.A.
Research Assistant

MSU '- a- Mir-anew Aruba/FM Med“ ham-lane

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237

 

238

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