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dissertation entitled

TOWARD A THEORY OF THE TRANSFORMATIVE POTENTIAL
OF GRIEF: PERCEIVED SOURCES OF SUPPORT
FOR BEREAVED YOUNG ADULTS
FOLLOWING LOSS OF A PARENT TO CANCER

presented by

Kelly Jean Rhoades

has been accepted towards fulfillment
ofthe requirements for

 

 

Ph.D. degreein Family and Child Ecology

( M4914 4/; [WU

Major professor

Date 3/30/94

 

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TOWARD A THEORY OF THE TRANSFORMATIVE POTENTIAL
OF GRIEF: PERCEIVED SOURCES OF SUPPORT
FOR BEREAVED YOUNG ADULTS
FOLLOWING LOSS OF A PARENT TO CANCER
BY

Kelly Jean Rhoades

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

DOCTOR OF PHILOSOPHY

Department of Family and Child Ecology
1994

ABSTRACT
TOWARD A THEORY OF THE TRANSFORMATIVE POTENTIAL
OF GRIEF: PERCEIVED SOURCES OF SUPPORT
FOR BEREAVED YOUNG ADULTS
FOLLOWING LOSS OF A PARENT TO CANCER
BY

Kelly Jean Rhoades

This study was designed to explore the young adult's grief experience
following the death of a parent to cancer, with a focus on discovering what
constituted helpful supports for the bereaved in this stage of the life
cycle . Growth potential from grief was assessed based upon a
transformative theory of grief . Research design was qualitative and data
collection consisted of in-depth , semi-structured interviews of 12 adults
between the ages of 23 and 43 years, recruited from a Hospice database.
Time since death was varied at 13 and 24 month intervals; within two
groups of six participants, three had utilized formal grief support
services, three had not. Four professionals involved in the provision of
grief services also were interviewed . Comparisons were made to clarify
misperceptions about useful grief supports . Major findings revealed that
all of the participants at 1 year were actively grieving, and lingering
sadness continued for those in the 2 year group . Growth from grief was
difficult to assess. In addition, formal support assessed as useful was
primarily in the form of support groups or classes. Themes that emerged
from the data were the role of friendship in the lives of grieving young
adults, and other developmental loss issues implying special needs for

resolution of loss at this stage in life . Hypotheses were generated that will

serve as useful guidelines for further exploration in areas such as
friendships and the family system as a form of support for grieving young
adults. Suggestions for future research include examining the effects of
bereavement at different developmental/life cycle stages, and exploring the
role of friendship as a source of support for the grieving young adult,
especially in the absence of a functional family system. Suggestions for
revision within Hospice bereavement programs were provided , with a
recommendation that evaluation studies be conducted to examine the
effectiveness of group support and to better understand the determinants

of the decision to seek support.

Copyright by
KELLY JEAN RHOADES

1994

DEDICATION

This dissertation is dedicated to the memory of my father, Irving Dale
Rhoades, who died as a result of colon cancer at the age of 50. I was 26
years old, in the midst of graduate study. His advice to me then, as he left
this world was to strike a balance between structure and flexibility (he
thought I worked too hard). His death has taught me about how to live life
fully . After eight years , I still grieve, although the hurt is for different
reasons and less intense. He will never see me graduate, or meet my
husband, or know and love the children we want to have. Those are the
developmental losses that will always sting just a little, and which the
bereaved in this study also identified as ongoing losses . After eight years
I also celebrate his memory, and the gifts he gave to me, which were many
- above all, he taught me to laugh, and to love peOple without judgment. I
continue on the transformative journey myself, as I question what my life
means, and what contributions I am supposed to make while I live. Losing
my father in young adulthood changed my life and my direction forever,
and it is because of the loss that I pursued this topic for study. So this
dissertation is also dedicated to the bereaved in the world who need help
and seek it without shame . Always my father's daughter, I will continue to
strive toward loving people and helping those that need help . I plan to
contribute to the deve10pment of effective grief supports and promote grief
education in society. This dissertation is my launching pad, as I work as a
human ecologist, promoting the health of individuals and families in

society .

ACKNOWLEDGEMENTS

It is often the case that major accomplishments in life are done with
the encouragement and assistance of others. This dissertation is a major
accomplishment for me . I have many people in my life whose support and
encouragement need recognition . I would like to begin by thanking my
family of origin: My mother, Thora Stefnisdottir Rhoades, for the
transgenerational gift of Icelandic tenacity . It helped me to endure this
process . I hope to grow into the wisdom that she possesses. My sister,
Kathleen Lou Rhoades who by example taught me to strive for academic
excellence . She was there for me when I needed someone to show me the
way. My brother, Kevin Rhoades whose wit and humor maintain connection
to the Rhoades family legacy. He reminds me not to take life so seriously,
as did our father and grandfather. We all continue to heal. I feel so
fortunate for the loving support of my husband Jeffrey David. He gave me
the greatest gift anyone has ever given me - the freedom and the time to
completely focus on this research for one full year. His love , silent
strength , and encouragement are between the lines . I would like to
express appreciation to my doctoral committee: To Dr. Linda Nelson, the
Chairperson of my committee . She truly is a committed academician whose
priorities lie with her students. Her attention to detail in the seemingly
endless rounds of revisions helped me to write clearly and concisely . Her
energy kept me going when I was weary. To Dr. Barbara Ames who was
instrumental in starting my graduate school experience by offering me a

vi

 

 

teaching assistantship 9 years ago . She provided invaluable guidance in
the writing of this dissertation. To Dr. Lillian Phenice whose class in
death and dying introduced me to the Hospice movement and made it okay
for me to grieve. She encouraged me to pursue my goals at my own pace.
To Dr. John Schneider whose life's work and theory about the grieving
process are at the base of this study. It was in his class that I learned
about the importance of receiving and giving validation in the journey
through grief. I am eternally grateful to the Hospice of Muskegon County
and the Executive Director Mary Anne Gorman for supporting this research
and believing in its value. Thank you to the entire Hospice staff for all
their support and encouragement during this project. I am especially
grateful to the participants, without whom this study could not have taken
place. I felt privileged to be a part of their journey. Many thanks go to
the support of my beautiful friends. I am blessed. I would like to offer a
special note of gratitude to my kindred spirit Anita Louise. She behaved in
me when I didn't believe in myself, and taught me the meaning of

perseverance .

TABLE OF CONTENTS

LIST OF TABLES ............................. xii
CHAPTER I. INTRODUCTION ...................... 1
Statement of the Problem ...................... 1
Background Information ....................... 2
Hospice Bereavement Paradox .................... 3
Significance of the Study ...................... 7
Objectives .............................. 7
Research Questions ......................... 8
Conceptual Definitions ........................ 8
Theoretical Models of Grief ..................... 11
Schneider's Holistic Model of Grief ...... . ....... 12
Theme one: What is lost? ................ 12

Theme two: What is left? . ............... 13

Theme three: What is possible? ............ 13

Worden's Tasks of Grief .................... 15
Task 1 .......................... 15

Task 2 .......................... 15

Task 3 .......................... 16

Task 4 .......................... 16

Family Development Perspective .................. 16
Human Ecological Perspective .................... 17

Family Ecology ......................... 18

Family Communication and Boundaries ............ 19
CHAPTER II. REVIEW OF RELATED LITERATURE ........... 21
I Young Adult Development ...................... 21
Attitudes about Death and Dying in America ............ 28
Hospice and the Reshaping of American Attitudes ......... 29
Developing Hospice Bereavement Programs ......... 30
Bereavement Reactions and the Death of a Parent ......... 32
Other Factors to Consider ................... 33
CHAPTER III. RESEARCH METHODOLOGY ............... 38
Selection of Participants ....................... 39
Descriptive Data on Participants .................. 44
Rationale for Research Design Decisions .............. 45
Data Collection Techniques ..................... 47
Primary Techniques ...................... 47
Supplemental Techniques ................... 49
Managing and Recording Data .................... 51
Data Analysis Strategies ...................... 53
Search for Negative Instances ................ 56
Validity and Reliability ....................... 57
Protection of Human Subjects ................ . . . . 62
Cost/ Benefit Ratio .......................... 65
Limitations ....... . ...................... 66

CHAPTER IV. MAJOR FINDINGS: CONCEPTS, THEMES, AND

DEVELOPING THEORY .................. 7O

The Young Adult's Grief Experience . . . ............. 70
Describing Diagnosis, Illness, Treatment, and Death . . . . 71

What Was Your Grief Like? ......... . . . . ..... 72
Formal and Informal Sources of Support .............. 74
Formal Supports . . . . .................... 75
Informal Supports ....... . ............... 76
Identifying Other Sources of Support ............ 80

Role of Friendship in the Grieving Young Adult . . ........ 82
Developmental Loss: What is Lost and What is Left? ....... 85
Changing Relationship with a Parent ....... . . . . . . 85

Loss of Opportunities ..................... 86
Return to the Holistic Model of Grief ............. 88
Theme one: What is lost? ................ 89

Theme two: What is left? ................ 91

Themethree: Whatispossible? 92

Building Upon the Transformative Potential of Grief ....... 93
CHAPTER V. MISPERCEPTIONS CLARIFIED .............. 99
Matching Perceptions ........................ 100
What Helps People in Their Grief . . . . . . . . . ...... 100

Hospice Program Clarity: Existing Services and Future
Directions..............................102
Hospice Bereavement 13 Month Follow-up: Suggested
Revisions . . . ......................... 103
FutureDirections.......................105
Documentary Analysis: Bereavement Support Questionnaire . . 106
Monthly Mailings: Letters and Articles ........... 107
Selected Hospice Services ................... 109

x

Inquiry about Additional Services .............. 109
Written Comments by the Bereaved . . . ........... 110
Summary of Questionnaire Results .............. 111

Comparing Questionnaire Results to Participants'

Responses . . ......................... 111
Hospice grief recovery seminar . ............ 112
Hospice monthly mailings. ................ 112

Comparing Questionnaire Results to Professionals'

Responses ..................... ' ...... 113
Summarizing the Comparisons ................. 113

VI. SUMMARY AND CONCLUSIONS ................... 115
Summary ............................... 115

Contributions to the Theory of the Transformative

Potential of Grief ........................... 116
Hypotheses Generated from the Data ............. 117
Additional Research Ideas . -, . . . .............. 120

Suggestions for Hospice Bereavement Services .......... 122

Reframing Concepts ......................... 123

Concluding Remarks ........... . ..... . ....... 128

APPENDIX A: Explanation of Hospice Regulation Procedures

in Michigan . . . . ............. . ...... 132
APPENDIX B: Series of Three Letters Sent to Participants ...... 134
APPENDIX C: Research Consent Forms ................. 137
APPENDIX D: Data Collection Aids ................... 141
APPENDIX E: Interview Guides ..................... 143
APPENDIX F: Hospice Bereavement Support Questionnaire ...... 147
BIBLIOGRAPHY .............................. 149

 

LIST OF TABLES

Table 1 Participant Groups .......... . . . . . . ......... 40
Table 2 System of Numbering and Ordering of Criterion Groups

forDataAnalysis ........ ........ 51
Table 3 Matching Qualitative and Quantitative Terminology for

Validity and Reliability ......... . . ........... 57
Table 4 Bereavement Support Questionnaire: Evaluation of Hospice

Monthly Letters and Articles. . . . . .............. 108
Table 5 Bereavement Support Questionnaire: Specific Hospice

Mailings Identified as Helpful ................... 108
Table 6 Bereavement Support Questionnaire: Usefulness of

Selected Hospice Services ..................... 110

CHAPTER I . INTRODUCTION

Statement of the Problem

Every year 11.6 million adults, 5% of the U.S. population, lose a parent.
Yet the number of research studies on parent death in adulthood is limited
(Becker, 1992) . Furthermore, although the death of a parent may be one
of the most critical events in adult development , and the literature on death
awareness is rapidly expanding, information on the effects of parent death
is almost nonexistent (Douglas, 1991; Malinak, Hoyt, & Patterson, 1979) .
Overall, there has been extensive growth in the literature in the area of
grief and bereavement, particularly in light of the earlier works of what we
would now consider to be "classic" studies (e.g. , Bowlby, 1969; Kubler-
Ross, 1969; Parkes, 1972) . But there still exists an information gap in the
area of parent death (Becker). To help fill the gap, Becker's book focuses
primarily on adjusting to the idea that a parent is dying, with less focus on
the grieving process. Since proposing this study, the researcher
discovered more recently published books in the pOpular literature on
parent death, one of which does focus more on healing (Kennedy, 1991) .
However, little information is available about the effects of parent death on
young adult development.

Douglas (1991) attempted to explain this gap by stating that, "a review
of the literature on parent death reveals little information , although there
is a considerable body of research that focuses on related areas" (p. 124) .
Related areas range from studies that examine caring for and losing an
elderly or aging parent as an adult in "mid-life," aged 35-55, (Douglas,
1991; Myers, 1988) to coping with separation and loss as a young adult,

aged 17-24 (LaGrand, 1986) . There is also a mass of information on early

2
childhood loss and later life development (Denes-Raj & Ehrlichman, 1991;

Finkelstein, 1988; Tennant, 1988) as well as the effects of parental death
on children (Grollman, 1967; LeShan, 1988; Wolfeldt, 1983) . Yet there
appears to be very little written about the experiences of grief and
bereavement for parent death in adults, and especially for adults 25 to 40
years of age. The decision to complete a qualitative study with a focus on
this age group came about because of an interest in young adult
development and after a review of the literature revealed that very little
had been written about the experiences of grief and bereavement for parent

death in a young adult's life.

Background Information

The researcher's personal interest in identifying supports for the
bereaved, and specifically for young adults who have lost a parent began
with the loss of her father as a young adult (age 26) . Professional interest
began after taking a doctoral course in death and dying , where the
researcher learned about the Hospice movement (one year following the loss
of her father), and subsequently accepted a position as a bereavement
coordinator within a Hospice. In addition and as part of ongoing doctoral
study, the researcher enrolled in a series of courses about grief and loss .
Information and knowledge about grief and bereavement on a theoretical
level became accessible through course work . The researcher continued
learning about the grieving process through hands-on experiences at
Hospice . It was useful to combine theoretical knowledge with real life
experience, witnessing the healing power of "validation" (Schneider &

Olson, 1990) . The orientation received in the Department of Family and

3
Child Ecology, specifically, the human ecological perspective (Bubolz &

Sontag, 1993) , dovetailed with the holistic and interdisciplinary team
approach within Hospice . Valuable experience was gained while teaching
the Hospice Grief Recovery Class and conducting in—home assessment visits
with the Hospice families. The ideas for this study developed from this
work, from continued scholarly commitment to learning about the
complexity involved in the grieving process, and from the researcher's own

experience with grief and loss.

Hospice Bereavement Paradox

Hospice bereavement services need support and validation of their
importance. There is a lack of funding, lack of clarity in program goals,
and lack of resources overall to provide for sustainment of competent
bereavement staff, and ongoing , quality program development (Beresford ,
1986; Lattanzi-Licht, 1988). In short, Hospice bereavement services are
not reimbursed by Medicare, yet to be a licensed, certified Hospice, the
program must make provision for bereavement follow-up for all Hospice
families (information about Hospice licensure , certification , and
accreditation is in Appendix A). Hospice is no longer a "movement" but
rather an ongoing aspect of the health care system (Hayslip & Leon , 1992) .
Attention of the industry has shifted from starting programs to regulating
them (Blum & Robbins, 1985, cited in Hayslip & Leon, p. 34). As the
Hospice movement grew from a philosophy of care to an ongoing part of the
health care system, the National Hospice Organization (NHO) , established
in 1977, sought public recognition and public and private funding for
Hospice services. Issues of quality of care also arose across insurance

providers, and the NHO was instrumental in developing guiding principles

4

underlying Hospice care . The Medicare Hospice benefit became law in
August of 1982, and in 1986, legislation made the benefit permanent
(Hayslip & Leon). Bereavement services were not included as part of this
Medicare benefit for reimbursement, yet provision of such services was still
required if a Hospice wanted to become licensed. This is still the case
presently (M . Gorman , Hospice Executive Director, personal
communication, March 4 , 1993) .

Beresford (1987 ) has written repeatedly about Hospice management
issues, and particularly about evaluating bereavement services . He states
that:

Offering bereavement follow—up support for survivors is a basic tenet

of the hospice philosophy, and is in fact required under the Medicare

Hospice benefit. However, Hospice Bereavement program planners

often may be hard—pressed to offer scientific justifications for such

services or even to specify what these services are intended to
accomplish . As a result, bereavement care may be among the most
vaguely defined and administratively neglected services offered by

some Hospices (p . 2) .

The researcher's postdoctoral career goals include involvement in
Hospice bereavement evaluation studies , in part, as a way to justify the
value of bereavement services . As a .Bereavement Coordinator and a
teacher of Grief Recovery classes, the researcher observed the value of
and developed "hunches" about the usefulness of grief education and
counseling. Yet only 6% of Hospices conduct any type of research, and
even fewer conduct evaluation of bereavement services (Lattanzi-Licht,
personal communication, March 2 , 1989) . Furthermore , Hospice
bereavement programs, due to lack of reimbursement, rely primarily on
outside sources for funding, such as allocations from the United Way, and
in-house fundraising. Lattanzi-Licht (1988) states that "the majority of

bereavement follow-up is done in the shadow of budgetary and staff time

5

constraints . . . consistency in bereavement services would allow for a
clearer , more accurate answer to the question of what bereavement services
achieve" (p. 82).

One final issue related to Hospice bereavement services involves a
misperception that exists in the field about just what it is that helps people
grieve. Observation in classrooms of grieving people led to the working
hypothesis that grief education facilitates movement through the grieving
process . But there is some documentation about differences between what
the professional views as being supportive to the bereaveds' needs, and
what the bereaved identify as being useful supports during bereavement
(Conway, Hayslip, & Tandy, 1991; Corr & Wass, 1991; Levy & Derby,

1992 ; Stylianos & Vachon , 1993) . A national study of bereavement done by
the National Academy of Science (Osterweis, Solomon, & Green, 1984) failed
to uncover conclusive evidence of measurable benefits from Hospice
bereavement programs . It seems there is a great deal to learn about
provision of services for the grieving person . "Why are we doing
bereavement?" asks one Director of a Hospice ( Tscheu, as cited in
Beresford, 1987, p. 2) . He states that answering this question will help us
to become aware of our assumptions about bereavement and grief, and
presents the idea that as professionals we might be doing what we are doing
in bereavement care to justify the (Hospice) philosophy.

Parkes (1988) , however, completed a 10 year survey on research in
bereavement and, although he credits Osterweis et al. (1984) , he states
that:

We are now beginning to realize that we cannot over-simplify the

problem of bereavement, and to recognize that, although our first task
may be to foster and strengthen the neighborhood supports and mutual

6

help that have always been available to the bereaved , there is a

substantial number of people for whom this help will not be enough

(p . 373) .

In this review of literature , Parkes cited research on grief and
bereavement which demonstrates the many negative consequences suffered
from the death of a loved one , such as: physical health problems, higher
rates of mortality than those who did not suffer death of a loved one,
hospitalization, mental disturbance, and suicide. He summarized by
stating that we have a great deal to learn about the complexities of
bereavement.

In summary, an obvious discrepancy exists between the findings of
bereavement research, the perceptions of professionals, and the services
offered by Hospice bereavement programs. Beresford (1987) surmised,
once again, that it may be related to program goals. Thus it is a return to
Tscheu's (as cited in Beresford, 1987) question: why are we doing
bereavement and what are the assumptions we are taking into program
development? The crux of the issue, according to the findings of
Osterweis et al. (1984) is that Hospices need help determining whether
their services are intended simply to offer modest efforts to their bereaved
families, consisting of a home visit, letters, and occasional (but timed)
telephone calls, social gatherings, support groups and referral. Or is the
goal to offer intervention services? Who is truly at risk? If a survivor is
at risk emotionally, or physically , then how far does Hospice reach?
Should an in-house psychologist or therapist be part of the Hospice
disciplinary team? The range of services and the intensity of follow-up do
vary widely among individual Hospice programs (Osterweis, et al. ) .
Beresford reduces this complex dilemma by asking two simple questions:

"Are the benefits of Hospice Bereavement services therapeutic or

7
humanitarian?" and "How does the Hospice insure that the few who are at

risk are properly identified?" (p . 2).

It should be evident by now that clarity on the goals of bereavement
services has become more urgent as Hospices continue to expand and
confront the financial pressures of the competitive health care system of
the 19903. Perhaps there will come a day when this component of Hospice
will be reimbursed and given more attention . Perhaps it will truly become

an integrated part of the services that Hospices offer .

Significance of the Study

The focus of this study was on a smaller scale and served as a
precursor to the long term goal of conducting evaluation research among
Hospice programs. The primary purpose for conducting this study was to
begin to assess "what helps people grieve?" with specific concerns for what
helps young adults grieve. A second purpose was to explore the
transformative potential of grief (Schneider, 1989) . An attempt was made
to learn more about the formal and informal sources of support that the
bereaved identify as helpful to them in their grief process, and to clarify

misperceptions about provision of grief support services .

Objectives
The short-term objectives were:
1. To understand the young adult's experiences following the death of
a parent to cancer .
2 . To identify formal and informal sources of grief support.
3 . To clarify misperceptions about provision of grief support services .
4. To build upon Schneider's (1989) theory about the transformative

power of grief .

The long-term objectives are:

1. To generate guiding hypotheses for further inquiry into the
grieving process .

2 . To complete Hospice bereavement evaluation studies as a way to
justify the value of bereavement services and to clarify program
goals .

3 . To test and utilize the Response to Loss ( RTL) Inventory developed
by Schneider and other colleagues (Schneider, Deutsch, McGovern,

& Morgan, 1992) .

Research Questions
The general research questions that led to the design of this
qualitative study are:
1 . What helps people, specifically young adults, grieve following the
loss of a loved one?
2 . What do young adults find supportive in their grieving process?
3. How do people find the strength and courage to move through the

grieving process and transform grief?

Conceptual Definitions
The Hospice bereavement program, specifically the Hospice Grief
Recovery Seminar, provides education and formal support to the grieving
individual in a way that facilitates the grieving process and helps one move
beyond the intensity of grief and into living again. The conceptual
definitions that follow are those that relate to the research objectives ,
research questions, and developing theory. Some are used in the next

chapter within the review of the literature .

9
1 . Hospice: refers not to an institution, but rather to a program of

care for the terminally ill and their families. This program emphasizes
control and palliation of symptoms rather than cure of disease (where
palliation means management of pain and symptoms of a life threatening
illness, and the focus of care is on comfort, not cure). Also emphasized is
the concept of care given at home or in a home-like environment, where
patient autonomy is maintained about decisions of care (autonomy means the
patient has the freedom to make decisions in his or her best interest, based
on personal values). In addition , dimensions of patient needs such as
emotional, social, spiritual, and physical reflect the holistic approach to
patient care. "Emotional" refers to the patient's feelings; "social" refers to
the life and relations of the patient and the pe0ple he or she comes into
contact with each day; " spiritual" refers to the person's moral or religious
beliefs and sense of hope; and "physical" refers to the bodily functions
that, due to the disease, require medical and/or nursing care. Because
the patient and his family are considered to be the unit of care, support is
provided both before and after the death (ideas from Osterweis et al. ,
1984) .

2 . Bereavement: refers to a state involving loss . In fact, to
"bereave" means to take away from (Kalish, 1985, p. 181-182).

3 . Bereaved: refers to those individuals who have incurred the loss of
a loved one through death. Individuals may be related. The bereaved in
this study refers to adults, aged 25 to 40 years, who have lost a parent to
cancer, or those persons who completed the Hospice bereavement support

questionnaires .

10

4. Young adult development: refers to movement over time of a young

adult (age 25 to 40 years) through life events, observing self and

 

environmental changes as adjustments to transitions and challenges occur .

5. Loss: refers to the death of a loved one.

6. Hospice bereavement support services: refers to a program
developed for family members of Hospice patients and also for others in the
community who are mourning the death of someone close. Such a program
is designed to facilitate the bereaveds' grief process with a focus that is
educational and supportive , promoting well-being . Services are provided
for both adults and children.

7. Grief: refers to the feelings of sorrow, anger, guilt, and confusion
that can arise when one has suffered a loss or is bereaved (Kalish, 1985, p.
182) .

8. Grieving process: refers to the movement through the feelings of
grief that one must experience in order to transform the loss.

9 . Transform: refers to an individual's capacity to move beyond grief
into a newly defined sense of living . (Transformative: a variation of
transform; ideas from Cochran & Claspell, 1987) .

10 . Transformative potential:

the transformations which result from grieving significant losses and

are often characterized by a shift from a focus on limits to an

exploration of opportunities. Transforming loss can allow us to
discover new ways to relate, understand, create and commit oneself to
an ongoing process of renewal and discovery. Loss, grief and the
potential for transformation are all part of the cycle and celebration of

life (Schneider, 1989, p. 31).

11. Hospice Grief Recovery: refers to a six week class offered through
Hospice that emphasizes how to manage one's feelings of grief and provides
instruction on how to move through the grieving process by accomplishing

certain identified "grief tasks." Such a class is based on an educational

11
versus therapeutic approach to managing grief. The tasks of grief are (a)

believing that the loss really happened, (b) facing the pain of grief, (c)
adjusting to the environment without the person who died, and (d)
reinvesting in a new way of life, and in new relationships. The six week
course is based on Worden's identified tasks of grief (Worden, 1982).
Instruction about Worden's tasks and other grief models is provided within
the classroom setting .

12 . Recovery: refers to the extent to which a grieving individual
learns to manage his or her grief by gaining knowledge about the grieving
process and having a willingness to transform loss.

One of the objectives of this study was to identify formal and informal
sources of grief support. Formal support has been defined in relation to
structured programs, while informal support was defined by the bereaved
during the interviews .

13. Formal support refers to programs, counseling services, ongoing
groups , or classes that are available within the bereaveds' local community
that function in a manner to provide instruction and assistance to the
bereaved, and more specifically, refers to the educational, structured
support that Hospice Grief Recovery Class provides, or a one-on-one
counseling or therapy situation that the bereaved attend .

14. Informal support refers to what the bereaved in this study defined

as friendships, family, significant others, church/faith .

Theoretical Models of Grief
One of the short term goals of this research was to build upon
Schneider's transformative theory about the grieving process. In

addition, Worden's tasks of grief were conceptually defined as the theory at

12
the base of the Hospice Grief Recovery Seminar, used as an educational tool

for helping bereaved persons. These two models of grief are discussed
below, followed by other related theories that support this research .
Schneider's Holistic Mode; of Gri_e_f

Schneider (1984) developed a model of grieving that is holistic in
nature , and includes multiple levels of experiencing: emotional, cognitive ,
behavioral, spiritual, physical. Whereas Kubler—Ross (1969) examines
more the attitudes about death and dying, providing a starting point for
theorizing about the grieving process, Schneider examines multiple levels
of responses to grief, thus permitting a more comprehensive understanding
of the grieving process. His model assumes a more optimistic stance,
whereby he believes the experiences of grief are not all painful and filled
with despair. One can grow from and integrate a loss, and perhaps find
new meaning in life, with a greater sense of self-awareness and priorities.
The model has three themes, under which various phases are described.
The complexity of this model is perhaps best described according to the
themes.

Theme one: What is lost? Schneider describes the person's ability to
maintain some level of functioning while preparing to deal with the reality
of the loss. The person experiences two phases: In the first phase,
initiating awareness (shock), one might ask: How is it possible that this
has happened? The person attempts to limit awareness by engaging in
coping mechanisms whereby he or she is holding on or letting go. Holding
on is exemplified by thinking, I don't have to face this loss if I keep busy,
try harder, or am overly optimistic. Letting go can be exemplified by
diminishing the true significance of the loss or attempting to escape from

the loss. This may be destructive, and often is a time to just "pull back

13

from" life for awhile (p. 69) . The next phase, awareness, is what most
people commonly refer to as active grieving . The person has literally
exhausted ways of avoiding the loss, and is facing reality.

Theme two: What is left? The person begins to enter into a time of
healing, recognizing limits, and identifying supports. Increased self-
awareness and search for meaning of life and reorganization of priorities
may occur. In the healing phase one might ask, what keeps me going? Who
gives me strength? The next phase, perspective, the person asks, what
remains? What is the best and worst of this experience? The person may
gain a new sense of living in the moment, vowing never to forget the loss,
but to move into living again. And finally, in the next phase,
restoring/regeneration, one might ask: Can I trust myself? The person
begins to accept the loss, perhaps passively at first, but begins to really
accept with time, that life will never be the same . Bereaved persons detach
themselves from those aspects of their lives that were meaningful, and move
into a new pathway and self-definition . Schneider states that a person , at
this phase, may choose to continue limiting awareness, and may not choose
to move ahead into defining a new life. This is a critical point in the
grieving process .

Theme three: What is possible? The person begins to integrate the
loss -- mind, body, and spirit - and may ask if forgiveness is possible.
What must be done to get on with my life? How does this loss fit into the
rest of my life? The person enters into the reformulation phase , where the
focus moves to one's potential. Are there other ways to look at this loss?
What is now possible for me in this life? Reformulation extends the self-
trust and self-awareness that emerge from grief ; the person may take risks

he or she has never before taken. Major life decisions and changes may

 

14
take place with energy renewal and the focus is on growth, and discovering

of potential rather than limits. The last phase, transforming the loss,
happens when individuals discover that the reformulation process is a
trustworthy one. They have accepted a new sense of identity, becoming

less self-focused and more focused on being open to all experiences.

 

Transforming the loss involves the person placing the loss in a context of
growth, and he or she may ask, how have I grown from this loss? How has
my view of the world changed? How much can I live? In this phase the
person integrates the emotional, physical, behavioral, cognitive , and
spiritual aspects of him/herself in order to gain higher levels of
understanding and acceptance of the loss (Schneider, 1984) .

Schneider summarizes by pointing out the holistic , growth-oriented
nature of this model, which is based on observations and experiences from
a variety of settings (e.g, clinical; educational). The model consists of the
following phases: initiating awareness; limiting awareness (coping);
awareness (active grieving); gaining perspective; integrating loss,
reformulating and transforming the loss .

Based on this theory, Schneider (1989) has conducted research and
written extensively about the grieving process as a way to promote
understanding of the nature of grief as a transformative process . In
addition, the Response to Loss (RTL) Inventory has been developed as a
clinical and research tool (Schneider, Deutsch, McGovern, & Morgan,
1992) . It is a self-assessment tool based on the model (Schneider, 1984) of
the grieving process outlined above . This researcher is particularly
intrigued by how some people grow from their losses and others do not.
This study was based on this interest, building upon Schneider's ideas
about the transformative potential of grief, and discovering how

15
transformation takes place . The holistic , comprehensive theory outlined
above is the primary theoretical base of this study, out of which came the
general research question, "what helps people grieve?"
Worden's Tasks of Grief

Worden (1982) identifies one assumption of his theoretical model wherein
he describes four "tasks" of grief. This assumption is that to grieve seems
necessary to effective functioning , or that grief requires some form of
expression (as described by Kalish, 1985) . Kalish supports this
assumption by stating that:

Whether this happens early in the bereavement or later, with great

initial intensity or spread out over time , through public display of

tears, or through private sorrowing by means of overt behavioral
expressions of grief or by means of physiological changes, grief will

virtually always be expressed in some fashion (p. 183).

The four tasks of grief as outlined by Worden (1982) are succinctly
summarized in a textbook written by Kalish (1985, p. 183) . Therefore,
this summary was utilized for description of Worden's model.

Task 1: The grieving person must believe that the loss really
happened, and accept the reality of the loss -- that the death is real.
Denial of the death may lead to prolonged and unhealthy grief (perhaps
pathological in some cases).

Task 2: The grieving person must accept that grief is painful, i.e. ,
must face the pain of grief. People may cope with the pain by attempting to
avoid it or dull it with the use of alcohol, drugs (including tranquilizers),
or by overworking or denial of the intensity of feelings (e.g. , anger, deep
sadness). In reference to task two, Yeagley (1984) states that "pain must
be experienced if healing is to occur. Pain must be expressed if growth

and new life are to result" (p. 24) .

16
Task 3: The grieving person needs to adjust to the environment that

no longer includes the person who died . This may mean many new
adjustments, such as taking on tasks that the deceased once did, or doing
things solo.

Task 4: The grieving person, over time, needs to withdraw the
emotional energy once invested in the relationship with the deceased , and
begin to reinvest in other relationships . This may mean developing
healthy, new relationships , or reaffirming the closeness with loved ones .

It may be obvious with this overview of two different theoretical models
that grief is indeed a process. Qualitative research is useful in the study
of processes, therefore, it was selected as the focal method for this study.
Initial interest was in the individual's perception of and experiences with
loss and healing, noting events as they unfold. This design proved most
useful in answering the question, "what helps people grieve?" and helped

to develop a better understanding of the young adult's experience of grief.

Family Development Perspective

The family development perspective has been a mainstay in studying
family relationships , and an important tool for understanding how the
family changes over time . Family theorists have various versions of the
stages of the family life cycle, the most common being the seven-stage
model that entails looking at family development in terms of successive
stages with developmental tasks characteristic at each stage (Aldous , 1978;
Mattessich & Hill, 1987) . This life cycle model represents linear movement
of the family through a set of stages over time, and has been criticized for
its assumptive conventional patterns (Is there a "typical family form" in

society?) , and its white, middle-class biases (Hogan, 1985 as cited in

17
Lamanna & Riedmann, 1994) . However, family developmental theorists

argue that this perspective is useful because it can sensitize us to
transitions and challenges that families encounter through the life cycle.

A transitional time in a young adult's life may be following the loss of a
parent. It has been speculated that "off time" events (Neugarten, 1976)
will influence the develOpment of a young adult, disrupting the timetable
for when people are expected to accomplish major tasks of adult life, such
as getting married, having children, or establishing themselves in a career
path. Furthermore, Schneider (1994) has defined disruptive losses, and
specifically identified parent death as a loss that takes from the person
sources of support and safety. Sheehy (1974) believes that the most
traumatic transition time in life is between young adulthood and middle
adulthood, the midlife crisis. Further discussion about loss of a parent
and the affect this may have on young adult development is included in the

literature review (Chapter II) .

Human Ecological Perspective

According to Herrin and Wright (1988) there is a growing interest in
using an ecological perspective within home economics, family studies,
family therapy , and human development . They have attempted to connect
the principles of an ecological perspective to the study of family life,
establishing an historical legacy of the ecological perspective as it is used
in the natural and social/behavioral sciences . Central to these principles is
the assumption that ecology is concerned with the interrelationships among
organisms and their environment (Bubolz & Sontag, 1993; Wright & Herrin,
1988). Application of the ecological perspective provides one way to

examine these interrelationships within families , with an ultimate goal of

18
improving the quality of life of family members and society (Bubolz &

Sontag, 1988) .

The human ecological perspective is useful in the study of processes,
particularly at the interface of the individual and family. Grief is a
process. Measuring and assessing bereavement reactions is complex due to
the nature and intensity of the symptoms of grief that can vary over time .
Furthermore , any research or clinical assessment related to grief and
healing calls for a multidimensional approach (Hansson , Carpenter, &
Fairchild, 1993) . The human ecological perspective assists in meeting this
goal, as integrating it into empirical studies aids in understanding the
complexity of interactions among people and their environment (Wright &
Herrin, 1988) . Ecological research is used "to identify patterns of
relationships between systems and their environments , especially noting
what happens at the interface" (Andrews, Bubolz, & Paolucci, 1980, p.

47) . Bubolz and Sontag (1993) note that the ecological perspective
emphasizes process and complex human-environment interactions using a
holistic approach. This makes it ideal in addressing certain problems that
cannot adequately be studied by using other theories with a more limited
scope.

Family Ecology

Family ecology has been defined as "representing and describing an
interdisciplinary ecological perspective for studying the dynamic
interrelationships among families and their environments and contexts"
(Wright & Herrin, 1988, p. 259) . Family ecosystems are assumed to contain
cybernetic processes such as feedback and homeostasis, i.e, regulatory
mechanisms that help maintain balance in the system (Wright & Herrin) . As

part of the interview in this study, participants were asked about the

19
quality of parent—child relationships and the changes in the family system

just previous to and after the parent died. The death of a family member
may disrupt homeostasis; change results as family members adapt to and
reorganize around the missing member (Lavee, McCubbin, & Olson, 1987) .
Adjusting to a loss involves a delicate interplay between the individual and
the family .
Family Communication and Boundaries

Sometimes people have difficulty carrying out their grief work within the
family and have to seek outside help (Rosenblatt et a1. , 1991) . Do family
members share their grief or cope with it individually, i . e , is the system
open or closed in terms of communication patterns? In addition , boundaries
within a family system represent a limitation upon interaction and activity
between a family and its environment. The limitations established by a
family will determine what is allowed inside and outside of that system
(Minuchin, 1974) . The boundaries in a family may also define the family
rules . A family rule might discourage a member from sharing information
outside the family, disregarding individual needs. Rosenblatt (1993)
describes family systems as possessing both implicit and explicit rules
(Ford, 1983 as cited in Rosenblatt, 1993) including rules that monitor
emotional expression. Depending upon the functioning of family rules, a
family may or may not be helpful in processing grief. One could assume
that open communication in the family about the death of a loved one might
have a positive effect on the family's ability to transform loss. However,
not all families possess a comfort level that allows for discussion of
uncomfortable or sad feelings such as those experienced in grief.

As regulatory mechanisms, family boundaries and communication
patterns determine how its members express grief. Some individuals may

20
not be coping well with the loss, and grief may be interfering with daily

functioning. Such a dynamic affects the family structure and function,
and, ultimately, what family members can contribute to society. Every
family member grieves differently, and perhaps those with impermeable
boundaries or within closed family systems may actually distance from one
another at a time when closeness and supportive behaviors would be more
desirable (Rosenblatt et al. ) . In sum, individual grief influences family
functioning, which in turn affects what one person or one family can
contribute to the larger environment. Within the human ecological
perspective, the interaction between people and their environment is of

central importance .

CHAPTER II. REVIEW OF RELATED LITERATURE

This preliminary review of the literature contains information on some of
the pertinent issues presented in Chapter I including: (a) the grief
experience for young adults following the death of a parent, couched within
a developmental perspective, (b) identifying formal and informal sources of
grief support, (c) the Hospice bereavement paradox, and (d) Schneider's
holistic model of grief (1984) . Following data analysis, after emerging
themes were identified , a second review of the literature was completed in
search of information that would assist in integration of these themes and
major concepts with the developing theory (Glaser & Strauss, 1967) . An

integrated summary can be found in Chapter IV.

Young Adult Development

Much of the work of the adult life cycle theorists has been based on the
classic work of Erikson (1966) and his eight stages of adult development.
Most notably, the young adult experiences certain "seasons" (Levinson,
1978) or "passages" (Sheehy, 1974) in development. He or she may
experience change or transition ranging from being in the crux of a major
upheaval or quietly reflecting on growth from changes that have occurred .
The most applicable "stages" for the adults in this study appear to be (a)
entering the adult world, (b) the age 30 transition, and (c) settling down
(Levinson; Sheehy) . In addition, Gould (1978) describes adult
developmental theory by linking childhood consciousness to adult
consciousness. Nemiroff and Colarusso (1990) summarize Gould's
"landmark contribution to adult developmental theory" (p . 367) in response
to Gould's clinical application of his initial theoretical framework (Gould ,

1990) . They succinctly summarize this stage theory by describing the

21

22

developmental steps toward achievement of adult consciousness . This can
only happen when one understands and overcomes the irrational fears from
childhood. If not acknowledged, these fears can carry into one's adult
life, interfering with developmental progression. One must confront and
release these irrational fears on the way to becoming an independent adult .
Gould (1978) describes the protective devices in part as false assumptions
used by people as they attempt to preserve childhood illusions of safety.
Abandonment of these false assumptions and redefinition of self must occur
if one is to progress into adult consciousness. Stage theorists are
compared in the following paragraphs as a way to understand the existing
and varying conceptualizations of young adult development .

Just previous to entering the adult world, the early adulthood
transitions usually occur between the ages of 17 and 22 years.
Developmental tasks during this time involve differentiating from the
parent, establishing an adult identity, and forming close intimate adult
relationships outside of one's family. The young adult at this stage is
attempting to balance the part of self that is still dependent on the family
and the part of self that is striving for autonomy. As a person establishes
new relationships outside of family , loyalty conflicts may arise . Gould
(1978) describes the inner tugs one often feels when attempting to balance
the need to have friends and love relationships outside the family with the
need to feel connected to the family. The young adult explores other
relationships as a way to support newly developing beliefs and changing
views of the world . Simultaneously , the very nature of "family" calls for
"lifelong loyalty" (Gould, p. 62) . As one shifts the feelings of family to
1 other groups of people who are important to the newly developing sense of

self, one may encounter these loyalty conflicts. If a person does not

23

"separate" and develop his or her own sense of self, it is theorized that
successive mastery of tasks at subsequent "stages" may not occur. For
example, one may realize the many challenges of establishing significant
other relationships because unresolved conflicts with a parent enter into
these new attempts at developing intimacy (Gould; Sheehy, 1974) .

What then are the implications of parent loss at this stage of
deve10pment? Harris (1991) studied adolescent bereavement and stated
that loss of a parent in adolescence comes at a time when separation and
individuation are central developmental tasks . Such a loss can be
disruptive to this task because the parent is no longer available for
working through of this stage , and the adolescent may have difficulty
accepting the finality of the loss .

In the next stage of adult development, as outlined by Levinson (1978) ,
a young person enters the adult world (ages 22-28) . He or she may be
testing the goals set up in an earlier time. The chief task according to
Levinson is twofold and conflicting . The person must shift from being a
child in one's family of origin to becoming a novice adult with a vast array
V of choices . Decisions are tested around issues of career, love
relationships, friendships , values and life style . Tension is often
experienced due to ambiguity between exploration and commitment, and
finding a balance between the two tasks can be simultaneously exciting and
confusing. The young adult is laying the groundwork for the future ,
creating a life structure for him or herself.

Gould (1978) describes this stage (ages 22-28) of development in terms
of false assumptions that need to be challenged and redefined if one is to
truly define oneself as a responsible adult . There is continued movement

away from one's parents' viewpoint and toward one's own viewpoint. It is a

24
time for building self-confidence, developing competency, assuming

responsibility for one's life and one's choices, and achieving independence.
Like Levinson's (1978) conceptualization of this stage, Gould describes the
vacillation between the desire to enter into this new phase of adulthood and
the desire to remain dependent and protected within the secure place called
home .

Little research has focused on loss of a parent at this stage, which
marks the beginnings of the age parameters selected for this study. It is
an issue that needs further study. However, Schneider's (1994)
examination of disruptive losses reveals that such losses challenge one's
beliefs, and people are often faced with two main issues of midlife: (a) we
have limitations, one being our own mortality and (b) relationships do not
last forever. Schwartzberg & Janoff-Bulman (1991) explored assumptions
about meaning in life following death of a parent for adolescents and young
adults. They found that the bereaved had not only lost a parent, but many
had lost the comfortable way of making sense of their world . Attempts were
made to minimize the disruption to their assumptive beliefs, and 30% of the
bereaved mentioned that the experience had called into question the belief
in personal immortality. Levinson (1978) states that whether it is a fear of
death or a desire to transcend it, preoccupation with death is common in all
adult transitional stages "since the process of termination-initiation evokes
the imagery of death and rebirth" (p. 51) . What does differ from one
transition to another are the meanings of death and the kinds of
developmental work to be done . How death affects development at each
stage is unclear. However, it seems that losing a parent at this stage of
development would create an upheaval , not easily assimilated when the
young adult is approaching a time in life where establishing intimate

25
relationships and preparing for a career are usually the focus. Levinson

points out that a developmental crisis occurs when one has difficulty
mastering appropriate tasks and it seems that transition takes a more
stressful form in the next stage of development: the age 30 transition.

If young adults do choose to follow the developmental trajectories within
the stage theories, making commitments usually continues as the focus in
their 30s. This can be demonstrated by decisions to marry or divorce,
have children, establish a sense of home/family, and overall, fulfilling
those "on time" events (Neugarten, 1976) . Death of a parent at this stage
may be considered "off time" as one of the tasks in the family life cycle
' theory involves childbearing -- providing grandchildren as one's parents
become grandparents . Neugarten believes that "social clocks" guide our
lives, and if we are "out of sync" with them, life may seem more stressful
than it is for those who are "on schedule. " Schneider (1994) outlines
assumptions that aid the age 30 transition, assumptions that replace those
from earlier life stages and serve as guidelines for a newly emerging life
style. Levinson (1978) describes the age 30 transition as a time for
changing the first life structure that was established in one's 203. A
moderate or severe crisis may be common during this period, e.g. , one may
find the present life structure intolerable, yet struggle to form a better
one . In severe times of crisis one may experience a threat to life itself and
loss of hope for the future .

The first three periods of young adult development described thus far:
(a) early adult transition, (b) entering the adult world, and (c) the age 30
transition focus on a person's movement through life between the ages of 17
and 33. According to Levinson (1978) they represent the "preparatory,

'novice‘ phase" of adulthood" (p. 59) . He maintains that the next phase,

26
settling down (ages 33—40) is crucial as one reaffirms old choices or creates
a second life structure by making new choices.

The second life structure entails a firming up of what has been
established thus far, perhaps enjoying some stability. It may also be that
at this stage, complacency or dissatisfaction with life choices thus far
signal restructuring. The task in this stage is to become a full-fledged
adult, graduating from the novice stage in early adult development as
described by Levinson (1978) . This is a time for coming into one's own
which is strengthened as one approaches the late 30s and into the 40s.

Gould (1978) conceptualizes the midlife decade (ages 35-45) with five
false assumptions that are challenged at this stage, two of which are
especially pertinent to the current study: (a) the illusion of safety can
last forever and (b) death can't happen to me or my loved ones. Similar to
the work of Levinson (1978) and Schneider (1994) , Gould maintains that
during this stage one is confronted with the reality of becoming a full-
fledged adult. One is losing the sense of having the parents' protection,
and assuming final authority over the conduct of one's own life. One is
feeling that former sense of safety slipping away, while simultaneously
confronting one's own mortality. The latter is especially true if one's
parent is diagnosed with a life threatening illness or dies . Gould vividly
describes what it is like for a young person to challenge this assumption is
the following passage:

The safe feeling that 'it is only a dream' is lost forever. Life's

limited time slams us in the face like a steel door, and the limi-

tation of our powers is never so pitifully clear as when time
temporarily becomes the only reality (p . 227) .

27
One may vacillate between denial and grief during a parent's illness and

death, attempting to restore the sense of safety one felt under the
assumption that things like this cannot happen.

Sheehy (1974) describes the middle of one's 308 as being the midpoint
of life . Similar to the conceptualizations of previously mentioned theorists
_ (Gould, 1978; Levinson, 1978 ; Schneider, 1994) , Sheehy describes this
stage as a time when one begins to notice the first signs of growing older,
acknowledging one's own mortality, and as "a sudden change in the
proportion of safety and danger" (p. 351) . This is a time when a person
experiences a change in the sense of time, shifting from time already lived
to time left to live . The developmental task according to Sheehy is to
acknowledge the change in one's sense of time, and to do that which one
has always wanted to do. The paradox as she sees it is that "as death
becomes personalized, a life force becomes energized" (p . 356) . Similarly,
Gould states that "the pain of remembering. . .what can no longer be
destroys any hope of cheating death -- and it thereby keeps us open and
alive" (p. 228).

Depending upon one's situation, resources to handle the death of a
parent at this settling down stage could vary greatly. For example, if one
is in a place of stability and contentment with one's choices and current life
style, perhaps the upheaval of losing a parent would be less disrupting .
Whereas if one is in a state of restructuring such as making a career change
or experiencing divorce, then the loss of parent could present one with
overwhelming life changes. These ideas are mere speculation, and testing
these stage theories via empirical study is recommended .

Rosenfeld and Stark (1987) question the common patterns presented in

the age and stage related theories, as they may not be reliable indicators of

28
what people will be like at various points in life. It may not be possible to

conceptualize a "timetable" for adult development due to the complexities in
today's world, such as the varying social expectations based on age-group
cohorts. Young adults today have a different perspective on life when
compared to those born during the depression, or the optimistic 19505
(Neugarten, as cited in Rosenfeld and Stark). Nonetheless, people move
through certain identifiable and similar patterns or events in life, and
family development theory and life stage theories assist in understanding
this movement over time, by indicating how individuals and families may

process change.

Attitudes about Death and Dying in America

Death is a part of life, and loss is universal. Confronting feelings
around the experience of grief can be frightening and even overwhelming.
This is especially true in a society that denies the reality of death and the
intensity of grief. The American way of dealing with a death is to not deal
with it openly (Becker, 1992) . For example, as little as 3 years ago, with
an effort at promoting education in death and dying , the researcher was
involved with a Hospice team that selected a lesson plan on death and dying
for the 4th grade. It was rejected by a state employee responsible for
curriculum development in elementary school systems in Michigan because it
had the word "dead" in it. Children are exposed to violence in the media
via television and perhaps within their own neighborhoods and schools, yet
there is still a taboo about talking about "death. " As a culture this
situation is improving, especially where children are concerned because
there is finally an awareness that children grieve too (Linn, 1990; Wolfeldt,

1983) . Since 1980, there has been an increased social recognition of the

29
issues of death and dying (Rognlie, 1989). Since Kubler-Ross's (1969)
book On Death and Dying, and the founding of the Hospice movement by
Cicely Saunders (1967) , American culture has at least begun to include
realistic thoughts and talk about death and dying (Becker, 1992) . Raphael
(1983) completed a survey of bereavement research that included more than
400 published works. Progress has been made culturally and empirically,
with the attention given to grief and bereavement research .

Even though the research in the area of bereavement is blossoming, as
identified previously , the number of research studies on parent death is
very few. Kalish (1985) states that:

Our society offers no clearly defined roles for adult children of dying

parents, so each family deve10ps its own way of functioning.

Nonetheless, the loss still has a profound effect on the survivors, and

among other changes it produces, parental death leaves the child a little

more aware that his or her own death is now a real possibility (p. 246).
Because this loss involves confrontation of one's own mortality , it may be
one of the most critical events in adult development , and still , information
on the effects of parent death is almost nonexistent (Douglas, 1991;
Malinak, Hoyt, & Patterson, 1979) . Moreover, one may still be sheltered
from death within one's family. For most people, the idea of discussing a
parent's death is not exactly a pleasant topic . Confrontation usually does

not occur until it absolutely has to be faced and then one may not know how

to begin to confront such a stark reality.

Hospice and the Reshaping of American Attitudes
At Hospice , life and death represent a delicate weave . Death is a final
act of living, and not something to avoid or deny. Hospice enables the
dying person to enter into the final stages of life with dignity, and as free

from physical pain as is humanly possible. Perhaps most importantly, a

30
person can die with his or her family members at the bedside, within the
familiar surroundings of where their lives were joined , at home. One does
not have to die alone or in an institution . Bereavement follow—up is part of
the holistic approach to patient care . "Bereavement follow-up is a primary
characteristic of Hospice and it sets Hospice apart from other types of
health care for dying persons and their families" (Hayslip & Leon, 1992, p.
180). But, the National Academy of Sciences' study of bereavement
(Osterweis et. a1, 1984) concluded that the range of services and the
degree of follow-up among Hospice bereavement programs varies greatly ,
and this investigation failed to uncover any real measurable benefits from
such services .
Developing Hospice Bereavement Progams

Given the findings about the lack of measurable benefits of Hospice
bereavement services (Osterweis et. a1, 1984) , Beresford (1987) suggested
that perhaps the questioning about the value of such services is related to
the philosophical goals of Hospice:

Are their services intended simply to offer balm to the majority of

survivors -- who are expected to experience a "normal" grief

process. . .or is the goal to intervene and prevent serious harm to those

grieving survivors who are truly at risk of serious physical or

psychological harm? (p. 2) .

Since there is little clarity in program goals, there is very little
research evaluating these programs . Lattanzi-Licht (1988) stated that this
question of whether bereavement follow-up achieves anything underlines
the deficit of research and evaluation of these services . She called for
consistency and reframed the boundaries of Hospice Bereavement in the
following statement:

Bereavement follow-up can serve as a transitional support . . . (it is)

not the antidote for the pain and adaptation of grief. A range of
services needs to be offered, with the realization that only a small

31

percentage of family members will avail themselves of group meetings or
memorial services (p. 82) .

Group meetings may be enough for those seeking transitional support. But
what about those who do need more? It appears that Hospices need help
with clarity in program goals, i.e, deciding upon the type and magnitude of
services offered .

Related issues in provision of adequate grief supports have to do with
grief reactions of the bereaved . Parkes (1988) completed a decade review
of the literature to examine bereavement reactions . He identified the types
of bereavement interventions that go beyond " mutual support resources in
the neighborhood and community" (p. 365) . He explored the latest
research on several levels within bereavement , such as the physical effects
of bereavement, the effects on one's mental health, and gender differences
in bereavement . Parkes also listed factors affecting bereavement outcome ,
such as age at time of loss, cultural factors (e. g. , mourning rituals,
expression of grief), type of bereavement (relationship of deceased to
living), anticipatory versus sudden losses, social and psychological
factors, and treating pathological grief. Overall, in this summary, Parkes
(1988) suggested that the problem of bereavement cannot be
oversimplified. Service providers need to recognize that for many people ,
moderate grief supports are not adequate .

Hospice offers some form grief support to all its grieving families, such
as an educational letter series about the grieving process , phone calls and
letters acknowledging an anniversary date , or an assessment visit with
referral to an ongoing support group . However, this may not be sufficient
for those bereaved who do develop physical health problems or
psychological/emotional disturbances following the loss of a loved one . In

32
addition, there exists a delineation between "normal" grief and

"pathological" grief. Though one might think of parent death as a natural
and expected event in adult life , when it actually happens one's emotional
reactions vary greatly, depending on many factors, such as who died
(mother or grandfather) and how they died (sudden death or chronic
illness) (Parkes, 1988) . A person's existing coping mechanisms also seem

to play a part in how one would cope with loss.

Bereavement Reactions and the Death of a Parent

One study looked at initial psychological responses to parental death
(Horowitz, Krupnick et al. , 1981) , while a follow-up study examined
reactions to the death of a parent (Horowitz, Weiss et al. , 1984) . Both of
these studies focused on a clinical adult population, i.e. , comparing
patients and nonpatients , or those adults seeking therapy to help cope with
the loss of a parent versus those not seeking therapy but whom the
researchers identified as having lost a parent to death. They found that
the patient group had significantly higher levels of distress 2 months after
the death than did the controls. They also found that the primary
differences included such variables as capacity to tolerate the intensity of
feelings and ability to move forward into the acceptance of the death.
Parent death was found to be a serious life event for both patient and
control groups, and the levels of distress did decline in both groups over
time. Overall results were useful in identifying those "other factors" that
might contribute to the stress of bereavement in parent death . A

discussion of these factors follows .

33
01'1le Factors to Consider

1 . Meaning of attachment: refers to who died, or the relationship of
the bereaved to the person who died. Parkes (1988) calls this "type of
bereavement . "

2. Cause of death: refers to how the person died -- was it a sudden
death or was death a result of a long term, chronic illness (Parkes, 1988) .

3 . Learned coping strategies: refers to individual responses to stress
or crises. These will vary depending upon how a person has learned to
cope with hardship (Malinak et a1. , 1979) .

4 . Grief reactions: refer to the way in which an individual responds to
the loss of a loved one , usually expressed in a variety of different ways,
and unique to that person, having to do with feelings and emotions. Grief
reactions may vary among family members (Horowitz, Weiss et al. , 1984) .

5 . Complicated or pathological grief: a pathologic reaction , by
definition , exceeds the capacity of the person to self-correct the condition .
Intervention of some sort is necessary - often for survival (Schneider ,
1984, p . 261) .

6. Time since loss: refers to how much time has elapsed since the loved
one died. This can either impede or enhance the grief process, since
people vary on how much time they need to sort through a loved one's
death . For example, for some it takes 2 years to begin to grieve; for
others, the loss may be integrated after 2 years. There is no predictable
time table for grieving . Time since loss plays a key role in the bereavement
program design in Hospices.

7. Gender differences in grief: Men and women are socialized
differently in our society in terms of expression of feelings. Malinak et a1.

(1979) suggested inclusion of comparisons of men's and women's reaction to

34

loss, and specifically, reactions to the loss of a father versus the loss of a
mother. Parkes (1988) in his review also suggested further study
regarding gender and grief reactions.

8 . Multiple losses: refers to other losses that the bereaved may have
had, enduring a stressful time or a time of upheaval in addition to the loss
of the parent. For example, another death of a family member or friend
may have occurred simultaneous to or around the same time as the death of
a parent. Or other significant losses or changes (e.g, job loss or change,
divorce, or birth of a child) may have occurred at about the same time or
just before the death of a parent. Inclusion of a "life line" activity during
interviewing was suggested by Douglas (1991) and Robbins (1990) as a way
to assess multiple loss factors .

9. Pre-existing psychological disturbance: Parkes (1988) lends insight
to the effects that bereavement may have on mental health by stating that
"since some people come through the stress of bereavement and emerge
stronger and more mature than they were , while others suffer lasting
psychological damage , it is important for us to identify factors which affect
vulnerabili " (p. 368) . There is controversy in findings in this area, as
it is difficult to measure (e . g, differentiating between depression and
normal grief, Schneider, 1980) .

Continuing with Parkes' (1988) suggestions, Rando (1992) cautions
caregivers in the field of thanatology to be aware of "pitfalls" in assessing
complicated mourning . Rando notes several problems that are inherent in
the field of thanatology and may actually be contributing to complicated
mourning . Among others , she acknowledges that caregivers are not always
adequately trained to assess complicated grief. All mourners are not alike

and caregivers must recognize and respond to the differences inherent in

35

different loss situations, e.g. , loss of a child versus loss of a spouse;
sudden versus anticipated loss. Such insight is particularly helpful in
relationship to the reframing of Hospice bereavement service boundaries ,
and to the issue of misperceptions about what professionals deem to be
helpful grief supports and what the bereaved may identify as helpful.
There is much to learn about the complex sequences of events which lead to
such disturbances, to specify interventions that are needed , and to test
out their effectiveness (Parkes, 1988) .

Another study , preliminary in nature , explored adults' reactions to the
death of a parent (Malinak et a1. , 1979) . In-depth interviews were
completed with 14 people whose mean age was 32.4. They discovered
several factors influencing reactions to loss of a parent, called categories
or themes , which were as follows: importance of the last meeting with the
parent and events at the time of death; initial responses to the death and
clinical significance of the absence of grief; what the adult child's
identification was with the deceased (their self-image); idealizing the
deceased parent; having ambivalent feelings about the deceased, e.g. ,
anger or guilt; coping resources of the bereaved, and favorable, growth-
oriented aspects . The authors were careful to cite limitations due to the
preliminary nature of this study, yet inclusion of these factors provided a
guideline for ideas about development of interview content and other
research design and methodology concerns for the current study. Most
notably, these authors concluded that a future study might want to address
issues of gender and bereavement, early and recent parent-child
relationships, death of first or second parent, and the effects of the death
on the family system. All of their suggestions were noted and these areas

were explored within the current study .

36
Finally, Moss and Moss (1983) looked at the effect of parental death on

middle aged children (approximately 35-55 years old), noting the paucity of
literature dealing with this issue . Some of the reasons given are: intense
grief may seem to be absent, or denied because of its severity; parent
death may actually be a relief and hence, a release; it is difficult to
quantify "grief" due to large individual, differences in expression. These
were merely suggestions, not data based findings. The authors were quick
to list limitations of their study which , once again, did provide insight
while conceptualizing the present study design . Those limitations were
lengthy, yet worth including in this review. They are (a) whether the
death is of the first or second parent, (b) the quality and circumstance of
the relationship over the life cycle, (c) the degree, intensity and quality of
the parent child interaction, especially toward the end of the parent's life,
(d) the circumstances and timing of the illness and death of the parent,

(e) social supports and the life situation of the surviving child, (f)
financial resources of parent; of child; did they live in the same
household?, (g) gender of the parent; gender of the child. (h) cultural,
ethnic and religious characteristics of the family, (i) personality of the
parent and of the child, and (j) the broader family and intergenerational
implications of the loss .

The studies reviewed thus far have dealt specifically with death of a
parent, yet the samples consisted mainly of "midlife" adults with an age
range of 35-55 years. Only the preliminary study by Malinak et a1. (1979)
addressed the age group that was the focus of this study (age range 25-40
years). In the study referred to previously about young adult
development (Schwartzberg & Janoff-Bulman, 1991) , the mean age of

bereaved subjects was 19 .8 years. These authors also noted the paucity of

37
literature examining young adult bereavement . The researcher was not

aware of any other study that attempted to explore or examine grief and
bereavement reactions of this specified group of people . However , a
return to the literature following data analysis, in search of supportive
evidence for the majority findings in this study, revealed resources in the
form of doctoral dissertations that address parent loss and the implications
this loss has for adult children (Staggs, 1989; Wheeler, 1991) .

The other research discussed in this review address other concerns
that are of equal importance, and in summary are as follows: (a) our death
denying society and the potential inhibiting affect this has on free
expression of feelings during grief, (b) the Hospice philosophy is growing
and so, too, is the continued ambiguity within bereavement programs and
outreach, and (c) since 1980 there has been an admirable surge of
scholarly effort within bereavement studies , however, there still remains a
gap in the literature regarding bereavement reactions and the death of a

parent for young adults .

CHAPTER III. RESEARCH METHODOLOGY

Qualitative research methods have become increasingly important modes
of inquiry for the social sciences (Marshall & Rossman, 1989) . Perhaps this
is especially true within Human Ecology, where researchers attempt to
capture the complexities of human interactions at the family and societal
interfaces (Bobbitt, 1990) . Qualitative methods have to do with discovery,
exploration and observation. The researcher becomes the research
instrument (Wolcott, 1988) . Having defined a general research question or
problem, the researcher , through observation and interaction with a select
group of people, begins to make discoveries about the phenomenon of
interest. He or she conducts a detailed analysis , attempting to produce
valuable explanations about processes. Bobbitt states that to choose
qualitative design, one assumes that phenomena can be understood from the
individual's perception of the situation. She writes:

Its purpose is to understand the perceptions and perspectives of the

people involved in the situation with emphasis on the larger picture and

the relationships of the micro- and macro-cultural systems. (It) does
not impose an a priori research design. . .but notes events as they

unfold (p . 3).

Furthermore, Bubolz (1991) describes qualitative methodology within
the interpretive or hermeneutic mode of science as best suited for an
exploratory study, where explanation comes through understanding of
intentions, motives , and reasons behind actions and responses . Marshall
and Rossman (1989) also describe valuing participants' perspectives on
their worlds, viewing inquiry as "an interactive process between the
researcher and the participants. . .that is primarily descriptive and relies
on people's words as the primary da " (p. 11) . In sum, the qualitative

researcher studies processes, capturing depth and richness in the

38

39

research findings . Qualitative methods are a search for general statements
about relationships among categories of data, and they can build grounded
theory and allow for generation of hypotheses that can be tested
empirically.

The above stated logic and rationale provide support for the decision to
utilize qualitative methods in this study, which was designed to explore
what helps people in their grieving process following the loss of a loved
one . Approval of the data collection procedures used in this research was
obtained at Michigan State University by the University Committee on
Research Involving Human Subjects (UCRIHS) on June 21, 1993. The
primary data collection technique involved in-depth, semi-structured
interviews with young adults . Other techniques involved interviewing
grief support providers and analysis of selected documents . This chapter
contains a discussion of how participants were selected , descriptive data on
participants , data collection techniques , data analysis procedures, validity
and reliability, and limitations of this study.

Selection of Participants

This researcher served as a bereavement coordinator in a Hospice for
nearly three years, from 1988-1990 . The position provided opportunities to
teach Grief Recovery seminars , run grief support groups for different
segments of the population , and conduct in-home assessments for grieving
individuals and families. This experience clearly influenced some of the
decisions made about the design and implementation of the study. This
Hospice graciously supported the research efforts here, serving as the
main site for recruitment of participants .

 

40
Indepth interviews were conducted with 12 adults between the ages of

23 and 43 years of age who had lost a parent to cancer. For comparison,
two criteria in addition to age were selected, (a) time since death was 13
months or 24 months, and (b) use or nonuse of formal grief support
services. Each of the two groups consisted of six participants and within
the two groups of six persons, three utilized formal grief support services

(FGS) and three did not (NoFGS), as seen in Table 1.

Table 1: P_articipant Groups (N=1_2_)

Time Since Death Use/Nonuse Support No . of Participants

13 Months FGS 3
13 Months NoFGS 3
24 Months FGS 3
24 Months NoFGS 3

Participants were obtained through the bereavement database at
Hospice of Muskegon County in West Michigan. Initial recruitment began
by collaborating with the Hospice clerical staff, identifying via computer
database those participants who met the specific criteria outlined. Not all
participants fell exactly on the 13 month or 24 month mark, thus a range
was established for both groups where the actual time since death could
vary by 1 month on either side of the ideal. Therefore, the 13 month group
could be 12 to 14 months since the death, and the 24 month group could be
23 to 25 months since the death . Two separate computer listings were
generated with 66 names on the 13 month list and 73 names on the 24 month
list with a total of 139 names. Each list contained the patient's file number,
patient's name, date of death, and primary diagnosis. Then for each name

on the list the researcher had to manually examine the "face sheet" within

 

41
the patient files which provides overall information about a patient and the

family. This process was necessary for identifying whether there were
adult children in the family that met the age criteria of the study. From
this process, two final lists resulted in 25 names for the 13 month group
and 17 names for the 24 month group, reducing the original number of
potential participants to 42 .

Potential participants were further screened for other appropriate
criteria. For example, since the study design included division of the 13
month and 24 month groups by use and nonuse of bereavement support
services, participants needed to be screened over the telephone regarding
this information as it was not readily available in the Hospice family files.
The bereavement coordinator kept records for everyone who had enrolled
in the seminars and groups through their agency. Contained within those
records were the names of both those who had utilized Hospice services and
those non-Hospice families or "community referrals. " Consultation with the
bereavement coordinator resulted in identification of 10 more potential
participants in the formal grief support (FGS) listings, six names in the 13
month group and four names in the 24 month group . The contact
information necessary for the non—Hospice families was provided by the
class or group rosters or a local telephone directory as needed. Finally,
since the pool of potential participants was obviously much slimmer for
those who had sought some form of grief support, contacts were also made
to two other local grief support providers, a hospital and a funeral home,
one of which was able to provide one more participant who met the stated
criteria.

The next phase of participant selection involved mailing letters to the

identified potential participants on Hospice letterhead, introducing the

42
study and asking them to participate (Appendix B). In this letter,
potential participants were told they would be contacted by phone within
approximately two weeks to inquire about interest in being part of the
study. Not everyone receiving a letter received a phone call, because
there was a greater number of potential participants generated than was
actually needed (especially among the two NoFGS groups). Therefore,
there was no procedure for selecting who on the final lists would be
contacted, although extra efforts were aimed at recruiting male
participants, to no avail. The researcher called potential participants as
they were ordered on the list, until a positive response was obtained from
12 people.

At the time of the call, the final screening was completed regarding the
selected criteria. If the person indicated interest, more detailed
information was provided about the study and an interview was scheduled
in his or her home or in the Hospice office. It should be noted that during
this initial phone contact, only three participants, two of whom were male ,
directly refused to be a part of the study. There also were those who
expressed an interest in the study, but had concerns over potential
emotional reactions that might occur during the interview. The researcher
reassured persons with this type of response by normalizing feelings, and
disclosing personal information about her own responses to the loss of a
parent, and professional experiences with other bereaved persons. For
some people, this initial time on the phone resulted in rapport building and
sharing of feelings about their grief. In the case of a potential
participant's refusal to be part of the study, the researcher also normalized

this type of response, and thanked them for their time and consideration.

43

Every attempt was made to schedule interviews in an intentional order,
beginning with the 13 month FGS group and moving into the 13 month
NoFGS group, the 24 month FGS group and the 24 month NoFGS group.
However, circumstances dictated a need to reschedule some of those in the
13 month group, and in reality, this ordered succession did not occur
exactly as intended. In addition, a brother/sister team from the 13 month
group cancelled their scheduled interviews after some of the 24 month FGS
already had confirmed a time. Therefore, the researcher opted to schedule
interviews on an as available basis until all 12 were completed. Eight of 12
bereaved participants in this study were recruited as a result of an
affiliation with Hospice .

After each interview was scheduled, consent forms (Appendix C) were
mailed with a second letter (Appendix B), thanking them for their
willingness to participate, and asking them to complete and save the
consent form until the scheduled interview . After the interviews were
completed, all 12 participants received a follow-up letter (Appendix B)
thanking them for participating, and reminding them of available support
services .

In addition to the 12 participants described above, four interviews took
place with the following professional grief support providers: the Hospice
executive director, a clergy person who works with the bereaved in that
community , the Hospice bereavement coordinator, and an oncology social
worker from a hospital in that community . These interviews were a
supplemental data collection technique used for exploration of what is/is
not being reinforced between gatekeepers and the bereaved in terms of
grief support services . Interviews with the professionals took place after

all interviews with the bereaved were completed . These interviews were

 

44
arranged with one telephone call , at which time the study was briefly

described and a request for an interview was made. All four responded
favorably , and a mutually convenient time was scheduled for the interview .
A separate consent form (Appendix C) was provided for the professional
participants and was signed just before proceeding with the scheduled

interview .

Descriptive Data on Participants

Interviews were completed between September 14 and October 29 , 1993
with 12 young adults, all caucasian, 11 females and 1 male, ranging in age
from 23 to 43 years old. The average age was 34 years. Eight participants
were married, three were single, and one was divorced. Six had children
and six did not. All but one participant resided within or nearby the same
town as the dying parent. All participants completed high school, most had
some college experience, with two having completed associates degrees,
and one a Master's degree. Total annual incomes for participants ranged
from under $5,000 to over $50,000.

It was proposed that every effort would be made to contain participants'
ages within the specified range of 25 to 40 years, with flexibility over this
exact range pending circumstances. There are two reasons for inclusion of
the 23 year old participant in this study. First, she had attended the
Hospice Grief Recovery Seminar just after her father's death two years
previously, and was still attending the ongoing bimonthly support group
which she entered right after the seminar . Recruitment of participants for
the FGS group proved more challenging than those for the NoFGS group,
and especially within the two year FGS group. Since she met two of the
three specified criteria, it was decided to interview her. The second

 

45

reason for inclusion was that at that point in the study, there were fewer
participants in their 20s, (average age was 34) , thus her inclusion
provided more balance in the age of participants. The decision to include
the 43 year old participant was based on the fact that he was the only male
participant that responded favorably to taking part in this study. Other
males were asked, but declined. It should also be noted that this
participant turned 43 between the time of the telephone screening and the
scheduled interview .

The procedure for recruitment of participants was designed with the
intent of obtaining equal distribution of males and females in the criterion
groups, even though it was anticipated that this would be unlikely. The
researcher's experience as a former bereavement coordinator was that
seminars and grief support groups were predominately attended by
females .

It also was decided to attempt to recruit siblings, perhaps male/female
pairs, or simply interviewing two same sex siblings for a perspective on
family grief. At one point, recruitment of a brother and sister team was
arranged, however both participants cancelled their interviews.

Recruitment of participants from the same family did not occur.

Rationale for Research Design Decisions
Varying the time since loss at 13 and 24 month intervals was not
arbitrary, but based on the desire to compare grief reactions over time,
and to follow the design of the Hospice bereavement services time line
where the bereaved are followed for 13 months after the death of a loved

one .

 

46

Choosing to interview young adults whose parent had died from cancer
or a long term chronic illness was based on the differing grief reactions
that people have when death is expected versus sudden. In addition, this
study was supported by a Hospice, and one of the long term goals of this
study addresses the need for evaluation of Hospice bereavement programs .
Thus completion of the work within this setting was mutually beneficial.
The majority of Hospice patients are admitted with a diagnosis of cancer.
All but one participant in this study had a parent die from cancer. One
participant's father died from chronic heart disease , after an illness of
nearly 10 years .

Three of the 12 participants had had both parents die: the first had a
father die from cancer in 1984, and had lost her mother in 1992; the second
had just lost her mother to cancer in 1990 and six weeks later her father
(with a history of mental illness) committed suicide; and the third lost both
parents to cancer just 2 1/2 months apart. Clearly, grief reactions may be
more intense when both parents die, and indeed this variable could be
treated as a confounding variable in a traditional positivist design. It was
decided to include these participants in this study because the focus was to
explore what helps people grieve and the transformative potential of grief ,
whether there was one loss or multiple losses . It is interesting to note that
three of the four criterion groups contained one participant who had lost
both parents, thus there was almost equal distribution . Overall, five
participants experienced death of a father, four experienced death of a

mother, and three experienced loss of both parents.

47
Data Collection Techniques

For primary data collection, in-depth interviewing was utilized with the
bereaved in the four criterion groups . Supplemental data collection
techniques included elite interviewing and analysis of available documents .
A description of these techniques follows.

Prim Techniques

The researcher used semi—structured, in—depth interviewing as the
primary method of data collection. Each interview was audio-taped and
lasted on average of just under two hours, ranging from 1 1/2 hours to 2
1/2 hours. Each participant was asked to choose the preferred location of
the interview. Eight chose in-home settings and four chose the Hospice
office .

Each interview began with reassurance about confidentiality, collection
of the consent forms , and a request to complete the background information
sheet as a way to obtain demographic information for all participants. Some
initial conversation usually occurred , as an attempt on the part of the
researcher to establish rapport . The interview then proceeded with the
use of a "life line activity" (Appendix D) which asked participants to list
the significant events in their lives on a life line, i.e. , a vertical line on a
blank paper marked off by years from birth to age 40. Instructions for
completion of the activity were provided, followed by clarification about the
meaning of "significant events. " Examples were provided for each
participant about what constitutes significant life events, such as a death,
a birth, marriage, job loss, graduation, moving, or major life
achievements. The objective for including such an activity was to aid in
gaining information about events preceding or following a parent's death.

Especially important was the intent to capture the richness inherent in

48
changes within one person's lifetime , particularly as they related to the

grieving process. The completed activity also proved useful during the
analysis of interviews by serving as a quick reference and a guide
accompanying the data .

Based on the literature review, an interview guide was developed
(Appendix E), containing the content areas of interest for exploration
about grief support . After completing the background information sheet
and the life line activity , the researcher provided a brief set of
instructions about the actual interview content . Each participant was told
that level of disclosure was at their own discretion based on their comfort
level, and that the researcher would be making notes on the interview
guide as the interview progressed as part of data collection.

Ordering of the questions was intentional, beginning with some general
information questions , and then moving into the more emotional laden areas
about their grief experiences. Length of responses varied with each
participant, some providing in-depth, detailed descriptions, and some
providing shorter answers . In the latter case, probes were made by the
researcher when it appeared the bereaved would be receptive to such
probes, however, individual levels of disclosure were respected. An effort
was made to ask all of the questions, in order, on the guide. Sometimes
participants answered questions before they could be asked . If this was
the case, a statement was made by the researcher indicating that a
particular area had already been sufficiently covered .

Each interview was transcribed verbatim from the cassette tapes as soon
as possible following the interview. The researcher chose to transcribe all
interviews herself as a way to begin immersion in the data , and formulate

ideas for direction in the analysis. This proved very time consuming, but

49
very helpful. Tapes containing interviews were destroyed immediately

after transcription . Observations made during the interviews were
recorded both during and after the sessions on a specially designed
"notetaking" form dividing description and interpretation (Appendix D).
Reflections about experiences were kept in a research journal throughout
the entire data collection period, and a separate journal was kept
documenting any personal events that may have influenced the researcher's
objectivity or abilities.
Supplemental Techniques

Two supplemental data collection techniques were used: elite
interviewing and documentary analysis . "Elite" interviewing consists of
interviewing those respondents that are considered to be the influential,
prominent , and well-informed people in an organization or community
(Marshall & Rossman, 1989, p . 94) . Elites are selected for interviews
based on their expertise in areas relevant to the research. For this
research, all the elites were professional people whose work entailed
provision of grief support services. An interview guide (Appendix E) was
developed based on the issues within related literature and professional
experiences. This guide was used during the professional interviews, with
primary interest in their responses to what they viewed as helpful to
grieving persons. All the questions on the guide were asked, as well as
additional questions that surfaced depending upon the participant's area of
expertise .

Three of these interviews took place within the participants'
professional environment, and one opted to conduct the interview in her
home to avoid interruptions . Interviews averaged about 1 hour and 15

minutes . Consistent with the bereaved interviews , all of the professional

 

50

interviews were audio-taped and transcribed verbatim by the researcher.
All tapes were destroyed following transcription .

Observations were made and notations were recorded directly on the
interview guide during the interview. Reflections about the interview were
written in the previously described personal journal. Journaling was an
invaluable tool to the researcher during both the data collection and data
analysis stages of the research process. Having such detailed

documentation allowed the researcher to return to an interview and

F

recapture moments, remembering even what participants had worn, the
setting, or the weather. The journal and the notetaking form also provided
a quick reference to help frame a particular interview transcript when that
was necessary. The personal journal that the researcher kept during the
research process provided a means to monitor and vent emotions that were
present after leaving an interview. After debriefing a participant,
journaling of feelings helped the researcher in her own attempts at
debriefing.

The second supplemental data collection technique utilized was

 

documentary analysis . Hospices routinely request that the bereaved
complete a "bereavement support questionnaire" as a form of closure and as
a way to evaluate Hospice services following participation in the 13 month
bereavement support program (Appendix F). The researcher tabulated
responses for these questionnaires collected over the past six years , 1987
to 1992 (N=205) . For purposes of perspective and comparison, the
researcher obtained historical data about the successful increase in number
of patient/family units served each year for these six years . The decision
to include this analysis as part of data collection was to provide

triangulation, thus lending to the generalizability of the study, and to

51
encourage the Hospice to utilize valuable, existing data that may be useful

to them in future planning.

Managing and Recording Data

Following transcription of all 12 of the bereaved interviews, each
numbered interview (Pl-P12) was placed in a three-ring binder in order by
criterion group, i.e, by use, non-use of supports and time since death.
Since the interviews were not conducted in any particular order, but
rather on an "as available" basis, each had to be given a new number, and
was re-ordered, for purposes of clarity and ease in description of each
group. Assignment of participant's identifying number and ordering of
criterion groups is clearly seen in Table 2 .

Table 2: System of Numbering and Ordering of
Criterion Groups for Data Analysis

Participant No . Time Since Death Use/Nonuse Support
1—3 13 Months FGS
4—6 13 Months NoFGS
7-9 24 Months FGS
10-12 24 Months NoFGS

Once the groups had been assigned a number for data analysis, and
placed in order in the binder, the researcher began to develop a strategy
to systematically compare the content in the 193 pages of transcribed
interviews . The decision was made initially to concentrate only on the
content within the bereaved transcripts. When this was completed, the
researcher began analysis of the 61 pages of professional transcripts.

Originally, it was proposed to color code emerging categories and

themes directly on the observation notes , however , these notes as well as

52
the life line activity proved most useful as guides to the interviews, and

color coding was not necessary . Highlighting the data with different colors
representing emerging themes and categories did prove very useful in both
the preliminary and final analyses of the data. It also was proposed to
number the pages in the data, and keep note cards connecting themes,
categories, and similarities and differences. However, it proved most
efficient to make these notations in the margins of the transcribed
interviews, and on the backside (blank) of each preceding page, adjacent
to the text . This seemed more efficient than keeping them separate on
notecards , saving the step of having to cross reference the material with
page numbers. When a passage in the data appeared to be supportive of a
theme in the developing theory or if it represented what the majority of the
participants were saying, then actual quotation marks were used in the
notation of the material for ease in locating the content , and only the actual
passages used in the final analyses were highlighted directly within the raw
data. Different colors were chosen to represent emerging themes and
developing categories and other information, such as that which would be
used for demographic description. This same procedure was utilized for
the analysis of the four transcribed interviews of professionals .

The initial managing of the data began with transcribing the interviews
from the cassette tapes, and continued as the researcher began to develop
a more systematic procedure to further condense the huge volume of
information within the raw data. The researcher was able to meet the
original goal of devising an intricate system of organizing and managing the

data to promote ease of retrieval for the final analysis .

53
Data Analysis Strategies

The process of condensing interview data to make it systematically
comparable by applying an objective coding scheme is called "content
analy " (Berg, 1989) . Holsti (as cited by Berg) broadly defines content
analysis as "any technique for making inferences by systematic and
objective identifying of special characteristics of messages" (p . 106) .
Furthermore, Berg points out that a decision must be made about which
levels or units of analysis will be counted when using content analysis . He
lists seven major elements in written messages that are commonly counted in
content analysis, two of which were adopted for analysis in this study:
"items" and "paragraphs" (p. 112-113) . The researcher made the decision
to use as the content unit a combination of both in-depth interviews
("item") and selected "paragraphs. " For example, in the attempt to
condense responses from the subjective listings of "what helped you
grieve?" the researcher summarized the content of paragraphs from the
responses in each in-depth interview transcript, and made notations on the
adjacent pages . Actual quotations were written after certain content areas
began to emerge repeatedly . It was speculated that such material might be
useful later in analysis, and some of it was actually highlighted in text, as
described previously. The decision rule was made to consider "majority"
(at least two-thirds of a criterion group) responses necessary in order to
count it as a category. Therefore, if four of six (two—thirds) 13 month
participants in response to the question, "what helped you in your grief?"
said that "someone to listen and understand me" was helpful, then it was
counted as a major emerging category, and included in final analysis.
Further comparisons were then made by comparing responses within and

between the 13 month groups, and then following with comparison between

S4

and within the 24 month groups. Finally, an overall comparison of
participant responses was done between the 13 month and the 24 month
groups. Each consecutive step in the data analysis is summarized in the
following section:

1 . Utilized content analysis with established units (item, paragraph)
and began coding the data by writing marginal notations and selecting
quotations from the text of the 13 month FGS group .

2. Repeated same for 13 month NoFGS group.

3. In a spiral bound notebook, developed columns for each participant,
first for the 13 month FGS group, and then for the 13 month NoFGS group.
These columns contained paragraph summaries of every question on the
interview guide , as well as themes that emerged .

4. From the column summaries, data were further condensed by color
coding majority responses, first for the 13 month FGS group, and then for
the 13 month NoFGS group.

5. Generated one list of summary statements about majority findings by
comparing responses from both the 13 month FGS and NoFGS groups.

6. This entire procedure was replicated for the two 24 month FGS and
NoFGS groups.

7 . Compared the lists of summary statements from the 13 month group
and the 24 month group about majority findings by producing one enlarged
version of columns .

8 . Finally, after generation and comparison of these final two majority
lists , categories emerged that could be attributed to groups of questions on
the interview guide . These questions were collapsed and an outline was
developed , matching the grouping of questions with the stated short term

objectives of the study .

55

9. Participants' verbal responses to the questions were again reviewed
within the data, and passages were color coded for use in the final report.

10. Three separate "themes" emerged, defined as majority responses
that were not the result of direct questions from the interview guide .
These were color coded in the columns and also in the data.

11 . Professional responses relating to selected areas of interest from
the literature were compared to the responses of the bereaved , and an
integrated summary of findings was reported.

Categories must be grounded in the data in which they emerge , hence
the term "grounded theory" (Glaser & Strauss, 1967) . Qualitative methods
provide a means to search for general statements about the relationships
among categories of data and help to build grounded theory. Marshall and
Rossman (1989) state that "in qualitative studies, data collection and
analysis go hand in hand to promote the emergence of substantive theory
grounded in empirical data" (p. 113) . The researcher is guided by initial
concepts and guiding hypotheses, but shifts or discards them as data are
collected and analyzed (Glaser & Strauss, as cited in Marshall & Rossman) .
In an attempt to build upon Schneider's (1989) theory about the
transformative power of grief, and to discover from bereaved persons just
what helps them in their grief, this researcher based data analysis
decisions on the previous work of the scholars discussed above, and on one
more qualitative research study (Robbins , 1990) that explored grief
responses to loss of a parent. The researcher was able to incorporate many
of Robbins' steps or "phases" about data analysis. For example, in phase
one, Robbins examined interview texts for themes, issues, and categories,
and phase two of her analysis consisted of a systematic comparison of major

themes and categories between and among all texts , which led to integration

56
of findings. The previously described data analysis procedures used in

this study were modeled after Robbins. Data analysis for this study also
models a "classic" approach called the "constant comparative method" by
Glaser and Strauss (1967) which is often used by qualitative researchers in
developing grounded theory. This method utilizes an inductive approach
to data analysis and also is concerned with generating categories, themes,
and hypotheses following a four-stage analysis that includes:
(a) comparing incidents applicable to each category, i.e. , coding the data,
(b) integrating categories and their properties, (c) delimiting the theory,
and (d) writing the theory. The purpose in using the constant
comparative method is "to generate theory that is integrated , consistent ,
plausible, and close to the data" (Glaser & Strauss, p. 103) . During the
interviews, "transformative" questions were asked such as, "Which things
will never be the same?" and "Did you grow or gain in any way because of
this loss?" These questions were most useful in the researcher's attempt to
build upon Schneider's (1989) theory of the transformative potential of
grief.
S_earch for Negative Instances

After data analysis was completed , the researcher returned to the
transcripts and searched for negative instances pertaining to developing
concepts, themes, and their relationship to the theory. Particular
attention was given to the hypotheses that emerged during data analysis ,
searching for examples in the data that did not fit the hypothesized
relationship of concepts and themes . A decision rule was made that at least
three separate instances had to occur in order for the researcher to
discard or reformulate the hypothesis. There was not sufficient negative

evidence in the data that led to a discarding of any of the formulated

 

 

57

hypotheses that had emerged. However, negative instances were
highlighted within the transcripts, and a list was generated summarizing
these areas. Further discussion of the use of negative instances in data
synthesis can be found in the next section about the validity and reliability
of this study .

Once the final data analysis was completed, there was a return to the
literature in search of supportive evidence for emerging categories ,
themes , and generated hypotheses about the transformative potential of
grief, as is customary in qualitative research . This information is

integrated with the reporting of findings in Chapter IV.

Validity and Reliability
One of the most common criticisms of qualitative study is the issue of
generalization, or external validity. Every bit as problematic, especially in
the eyes of the traditional positivist, are the issues of internal validity,
reliability, and objectivity. Lincoln and Guba (cited in Marshall and
Rossman , 1989) have matched these positivistic terms with terms that more
appropriately reflect the assumptions of qualitative research (p . 145-147) .

This matching can be seen in Table 3.

Table 3: Matching Qualitative and Quantitative
Terminology for Validity and Reliability

Quantitative Terms Qualitative Terms
Internal Validity Credibility
External Validity Transferability
Reliability Dependability

Objectivity Confirmability

58
Perhaps this matching makes sense in the search for truth, but it may still

seem odd to assign the same criterion for a "sound study" to two very
different, yet compatible research methodologies . The following discussion
addresses some of the concerns about validity, reliability, and issues of
objectivity/ subjectivity that some traditional positivist researchers have
about qualitative research design .

1 . Credibility: The goal is to demonstrate that the inquiry will be
conducted in such a way as to ensure that the subject or topic is accurately
identified and described. In positivism, this is internal validity, and it is
concerned with how truthful particular findings are of a study, and asks
by what criteria can one judge research findings of a study? Within the
interpretive mode of research , "an in-depth description showing the
complexities of variables and interactions will be so embedded with data
derived from the setting that it cannot help but be valid" (Marshall 8:
Rossman, 1989 , p . 145) . A qualitative researcher must adequately state,
then , the parameters of the research setting , of the population, and of the
theoretical framework. Every effort was made to do just that in the current
study. The very strength of qualitative study is its validity, in that it
aims to explore a process or pattern of interaction .

2 . Transferability: This is perhaps one of the most problematic areas
of qualitative research , especially in the eye of the positivist who
recognizes this construct as generalizability or external validity. Such a
weakness can be dealt with in a qualitative study in several ways . The
first is to refer back to the original theoretical framework to show how data
collection and analysis will be guided by concepts and models. The
theoretical parameters of the research are stated, clearly and concisely , so

a determination can be made, within these parameters, by policy makers

59

whether or not the cases in a given study could be generalized for the
making of new policy, and transferred to other settings. For example,
Hospice policy makers (National Hospice Organization or insurance
companies), after careful review of the theoretical base, the concepts and
ultimately the findings of the current study may decide that such
information can be generalized or "transferred" to the grieving population,
in general . Perhaps bereavement program planning will become more
seriously considered . The researcher did not expect reimbursement of
bereavement services to become a reality because of the efforts within this
study, however , some discoveries were made that helped generate
hypotheses for future studies. Further research and theory testing could
build upon and help bridge the currently existing grief models presented
within this study.

One other way of enhancing generalizability is to utilize triangulation as
a way of collecting data. This entails collecting data from more than one
source, in more than one way, but still addressing one research point or
question. Wolcott (1988) describes the process by stating that:

the researcher himself is the research instrument, but in his

information gathering , he utilizes observations made through an

extended period of time, from multiple sources of data, and employing

multiple techniques for finding out, for cross checking or for ferreting

out varying perspectives on complex issues and events . The strength

of fieldwork lies in triangulation (p . 192) .
Triangulation addresses a study's research question in a way that helps to
expand upon it or illuminate it (Rossman & Wilson, 1985 as cited in Marshall
& Rossman, 1989) , thus making it more useful for other settings. This
strategy was utilized in the current study and is described in Chapter III

on research methodology .

60
3. Dependability: is commonly known in quantitative research as

reliability, addressing the issue of replication of a research study. This is
a problem in qualitative inquiry - period. The entire assumption
underlying indepth, rich data gathering is to study the process of change.
The researcher purposefully avoids controlling the research conditions and
concentrates on recording the complexity of situational contexts and
interrelations as they occur. A flexible research design allows for
attainment of the goal of discovering the complexities that are part of the
processes being studied. Replicability will not be possible, nor sensible
given qualitative design. However, a research journal can be kept and was
kept in this study. It was used to record any changes in design decisions
as needed, and for documenting any changes or significant events in the
life of the researcher -— the research instrument. Dependability of this
study was enhanced by keeping data well organized and in a format that
allowed ease in retrieval of information from the huge volume of raw data .
Preservation of data also was made a priority, by taking extra precautions
to make back-up copies of diskettes , and appropriate written materials .

4. Finally, the fourth construct used to assess the soundness of a
qualitative study is confirmability , or objectivity in positivistic
terms. It is possible that as a researcher, one's own subjectivity may
shape the research, particularly with a topic that is close to the heart. But
in qualitative study, this subjective stance is actually a strength , because
it is precisely the researcher's understanding of the grieving process, and
familiarity with the feelings of grief that provided entry into the world of
the bereaved. Marshall and Rossman (1989) stated that the researcher's
insights increase the likelihood that she will be able to describe the complex

social system being researched . However, they caution that the researcher

61
must also provide controls for bias in interpretation , and offer several
ways to help curb such a bias. They suggested (a) having a research
partner or a person to play devil's advocate when reviewing analyses, (b)
maintaining a constant search for negative instances (Glaser & Strauss,
1967) to disprove the developing theory, (c) checking and rechecking the
data and purposeful testing of possible rival hypotheses, and (d) outlining
a useful notetaking technique that will facilitate analysis. The researcher
utilized three of four of these suggestions in the current work. A constant
search for negative instances was done during data analysis, looking for
examples in the data that might refute Schneider's theory. In addition, the
researcher presented the preliminary results of this study to a group of
people interested in grief as a topic for research. Feedback was solicited
by the researcher regarding generation of hypotheses, and/or rival
hypotheses, and overall insights from the group about the results . Lastly,
in a doctoral course on qualitative methodology, the researcher practiced
notetaking with a form that was developed for recording, separately,
factual observations and interpretations of facts (Appendix D). Allowing
for creativity or interpreting of observation may prove to be useful for
more formal analysis, although that was not the case in this study.
Observation notes were used as a guide to accompany the transcribed
interviews, and did serve as another way to check the credibility of the
raw data. Wolcott (1988) summarized the value of this exercise as follows:
Description and interpretation need not be so dramatically separated in
the final account, but I think it a valuable exercise for someone new to
descriptive writing to begin by preparing an "objective" account as free
as possible from one's own inferences and preferences (p. 201) .

In addition to issues of validity and reliability, of utmost concern was

the conduction of ethical research that preserved the rights and dignity of

62
the participants. The following section includes a discussion of the

protection of human subjects, and the cost/benefit ratio of conducting the

research .

Protection of Human Subjects

As Wolcott (1988) stated, the researcher in qualitative research becomes
the research instrument . The researcher , through observation and
interactions with a select group of people , begins to make discoveries about
the phenomenon of interest . Because of the key role the researcher plays
in data collection , an awareness of how one may be influencing an interview
must always be kept forefront. Careful thought was given during study
design to the managing and recording of data. A research journal was
maintained to record any thoughts , feelings , reactions, reflections, or
changes in the researcher's life situation as a way to indicate how events in
one's personal life might influence data collection . In addition ,
observations during the interview were written immediately after the
meeting on the notetaking form (described in Chapter III; see Appendix
D). Thus a conscious, thorough monitoring of self was maintained during
interaction with participants .

In addition, the consent form (Appendix C) for bereaved in this study
was designed with careful thought about the ethical treatment of
participants in this study. This was especially true given the nature of
this study where asking participants about their grief experiences
represented a delicate area. Time was devoted both before and after
interviews with all participants , the former for development of rapport and
the latter for a time of debriefing . The researcher made sure participants

were in a comfortable place emotionally before leaving an interview , and

63
provided all participants with information about a contact person at Hospice

if they found they required assistance after the interview . Permission to
call the Hospice office and ask directly for the researcher was also given,
however, a need for follow-up did not occur for any of the subjects, either
in the form of a request to speak to a Hospice staff person, or the
researcher . Conducting the interviews required a particular sensitivity on
the part of the researcher , who had previous experience to develop specific
skills and abilities.

1 . Conducted 32 in-home interviews as part of a research project,
within the Department of Family and Child Ecology (1986-87) .

2 . Served as bereavement coordinator at a Hospice from 1988-1990,
where duties included conducting in—home assessment of grieving
individuals. During the interviews, the researcher was cognizant of
conducting an interview, not an assessment.

3 . Taught Hospice Grief Recovery Seminars, led annual Memorial
Services for Hospice families, and conducted Holiday Seminars for assisting
bereaved with grief during the holidays .

4. Completed courses in marriage and family therapy, and gained
experience as an intern counseling individuals, couples, and families.

5 . Completed pertinent doctoral course work in areas such as: death
and dying , grief and loss, qualitative research methods , quantitative
research methods, statistics, marriage and family therapy, communication
and crises, assessment, and interviewing.

All of the above experiences , combined with the researcher's own
experience of parent loss in young adulthood, integrated the past with the
present and provided a special sensitivity for capturing the richness and
depth that interviews can provide . This background seemed sufficient to

64

avert any difficulties that may have occurred , as interviews were
conducted without apparent harm to the participants. In fact, some
participants began disclosing about grief experiences during the initial
phone call which was designed only for screening and establishing interest
in the study. All 12 participants expressed that the interview itself served
a form of support and that they viewed it as a positive experience, despite
some initial apprehension .

Data collection procedures used in this research were approved at
Michigan State University by the University Committee on Research
Involving Human Subjects (UCRIHS) on June 21, 1993. Confidentiality was
reassured at the beginning of each interview, and maintained by
assignment of a code number selected by the researcher. As outlined in
the proposal for this study, interviews were audio-taped with the
permission of the participants , and were erased immediately after
transcription . All notes, memos , and cassette tapes were identified only by
the assigned number, and were kept in individual files, in a box, in the
locked trunk of the car during times of transporting. Files and other
materials were retrieved as needed for data collection, and then stored in
the researcher's home office after data collection was completed . The
names and addresses of the participants were obtained and are on file
currently only for purposes of offering summary results to those who
indicated an interest. And finally, any publication or presentation of this
data will not include information that could identify the participants of this

study .

65
Cost/Benefit Ratio

As stated previously, the participants found the interview experience
to be supportive in itself, expressing gratitude for the opportunity to have
been able to tell their story to someone who wanted to listen . The short
term benefits to individual participants and society as a result of this study
include a greater understanding of the grieving process, hence the
opportunity to provide clarity and efficiency in program planning and
provision of grief support services . Continued program development
within Hospice includes provision of a children's grief support group with a
family component. This type of service is both educational and
therapeutic , with one long term benefit of making a systemic change in
attitude that makes the expression of grief normal versus something to be
avoided . Other long term benefits include potential justification of Hospice
bereavement services which will enable reimbursement from Medicare and
other insurance companies . Ultimately , this action will benefit individuals
and families in that they will be able to obtain adequate and affordable grief
support services as needed . Promotion of grief as a normal response to
loss occurs through education about the grieving process. Participants
who attended grief educational seminars in this study reported them as
valuable in part because of the validation received and normalizing of
feelings. What participants learn about the grief process and tasks of grief
may circumvent later physical, emotional, or psychological upset.
Furthermore , sometimes moderate grief supports are not adequate; for
example, for those who do develop physical health problems or
psychological/emotional disturbances following the loss of a loved one ,

outside assistance can be costly on many levels (Parkes, 1988) .

66
Limitations

There are several limitations of this study . A discussion of them
follows .

1 . Participant groups were small in number and homogeneous in nature
in that recruitment occurred primarily through Hospice, consisting of
almost all caucasian females. Stroebe (1993) examined cross-cultural
evidence that revealed that not all cultures subscribe to the " grief work
hypothesis, " stating that there is "not always a working through of a loss
to achieve detachment from a deceased person" (p . 29) . Furthermore,
"suppression of memories is prescribed in certain cultures , just as the
notion that one must work through grief is prescribed in our own" (p. 30).
"Cultures vary considerably in the meanings assigned to loss, and in the
nature of grief and its expression" (Hansson, Carpenter, & Fairchfld,
1993, p. 72) . Clearly, the groups did not reflect cross-cultural
differences in expression of grief, thus any majority findings need to be
placed within this context. This lack of cultural diversity in selection of
participants may stem from the fact that the Hospice from which
participants were recruited serves only a very small percentage of minority
families. Such a fact may reflect geographic region and/or the diverse
attitudes that exist in cultures about death and dying, and the value one
places on cathartic grief expression, i.e, the Hospice philosophy promotes
open expression of feelings around issues of death and dying, grief and
loss, and individuals whose cultural values promote suppression of
expression may not subscribe to the concepts purported by Hospice.

2 . Participants' reports were retrospective, and based on one-time
interviews . Ideally, a second interview could have provided the

opportunity to administer the RTL Inventory (Schneider, Deutsch et a1. ,

67
1992) , giving more support to the finding that participants in this study

had not reached a reflective point in their grief where self—empowerment
and transformative processes occur.

3 . Every effort was made to promote gender equality within and across
groups, to no avail. Clearly, it was not feasible to discuss gender
differences in relationship to grief expression, as attempts at recruiting
males participants failed. Given the socialization process that exists in this
culture , it was not surprising to the researcher that male participants were
reluctant to grant an interview , especially to a female interviewer . This is
not meant to be a judgment, but rather a statement of fact, and maybe a
male researcher/interviewer could pursue study of men's grief in the
future .

4 . Inquiry about different grief experiences as those related to loss of
a mother versus loss of father did not surface as an important theme , nor
did the researcher ask directly about these differences . Participants were
directly asked about whether they had lost one or both parents, but the
researcher failed to probe as to whether the death of a mother or father
affected their grief experiences. There were three participants who had
lost both parents, and a search for contradictory or dissimilar responses to
those who had lost just one parent revealed that, particularly for two of the
three, active grieving seemed to be just beginning following the first year
of the losses. In other words, limiting awareness and simply coping from
day to day seemed to be more characteristic of these two participants who
lost both parents. Further study on the effects of multiple loss on
adjustment is recommended. In addition , perhaps another study could
explore gender differences in grief reactions , comparing differences by

whether one has lost a mother or a father .

68
5 . Some research has been completed on who is likely to attend grief

support groups (Levy 8: Derby, 1992) . Many factors affect one person's
grief expression and the option to seek formal support (see subheading
entitled, "Other Factors to Consider" under section "Bereavement
Reactions and Death of a Parent," Chapter II). It was assumed that those
who seek formal sources of support believe that it will be helpful to them.
Part of the difficulty in conceptualizing and studying the grieving process
and grief support is that grief is a unique experience for people, and
formal support is evaluated as it is perceived by the receiver, i.e. , what
works for one person may not work for another . In addition, most people
survive the grieving process without the help of a professional (Schneider,
1984; Worden, 1982) . Therefore , the researcher assumed that persons
seeking grief support believe in advance that it will be helpful and that
they need it. Thus self-reports about the usefulness of grief seminars and
groups may be inherently biased .

6. The results from analysis of the Hospice "Bereavement Support
Questionnaires" (Appendix F) were compared with the responses of
participants in this study. It was proposed that the only questionnaires
that would be used for analysis were those returned by young adults
meeting the specified criterion outlined for bereaved participants in the
study. However , because the overall response rate for questionnaires
returned over 6 years was a mere 16. 5%, the decision was made to compile a
summary report for all questionnaires (N=205) . In addition, demographic
information was not part of the questionnaire, thus it was not possible to
identify time since loss or age of a participant. Summary results were
compared with responses from bereaved in this study about the usefulness
of formal supports, lending insight about the effectiveness of selected

69

Hospice bereavement services. Ideally, a comparison of same age young
adults would have been more informative from the developmental
perspective, but this simply was not feasible. Lastly, the analysis of the
documents proved useful to the Hospice in the long run, as these

questionnaires had not been summarized .

CHAPTER IV. MAJOR FINDINGS: CONCEPTS, THEMES, AND

DEVELOPING THEORY

Losing a parent in adulthood may deal a significant blow to one's
emotional and physical equilibrium (Moss & Moss, 1983) . Although loss of a
parent may be a critical event influencing adult development, little
research exists in this area (Douglas, 1991) , and even less attention has
been paid to the bereavement experience in life course stages (Perkins &
Harris, 1990; Scharlach & Fredriksen, 1993) . Data analysis of interviews
from the 12 young adults in this study revealed that after 1 and 2 years
following the loss of one or both parents, lingering sadness and mood
swings were still present. All of the participants in the 13 month group
considered themselves to be actively grieving. The following sections
represent concepts and themes that emerged from the interview
transcripts , and their relationship to the transformative potential of grief
(Schneider, 1989) . Differences existed between the 13 month and 24 month
groups, and responses varied depending upon whether a person had or had
not sought formal grief supports. Therefore, majority findings have been

reported noting these differences.

The Young Adult's Grief Experience
To develop the concept of young adult development and how
development is influenced by the death of a parent to cancer, two questions
were collapsed from the interview guide . These questions were:
1. Can you describe to me what your grief was like? A prompt was
given stating that they could begin with the time of diagnosis or after the
death. Most began describing their grief as it began with the diagnosis of

the cancer.

70

71

2 . What were the circumstances of the death?
Describing Diagposis , Illness, Treatment. and Death

A theme was defined as something that consistently appeared in the data
in at least two-thirds of participants' responses, and for which a direct
question did not exist. This was information that the participants supplied
that reoccurred without the researcher asking about it directly. For
example, in the'13 month group, all six described the initial diagnosis,
illness, and treatment procedures experienced by the parent and within the
family. The majority of the participants chose not to describe the actual
moment of death, with only one vividly describing the experience of being
at her father's bedside as he died. In the 24 month group, two-thirds of
participants provided detailed descriptions of initial diagnosis, illness, and
treatment procedures with the other one-third describing this, but
focusing more on what their grief was like after the death . Only one in this
group described the actual moment of death, and did so as the researcher
was leaving the participant's home, so this was not audio-taped.

The descriptions of the gradual loss and deterioration of the dying
parent were vivid and sometimes very lengthy accounts, containing
recollections of specific dates , times about when chemotherapy or radiation
treatments began, or what it was like to be in the waiting room at the
hospital as the parent was receiving initial surgery confirming the presence
of cancer . The gradual physical deterioration of the parent seemed to
parallel acceptance of the reality that this was really happening, as
described by one participant in the 24 month group:

And I think when we found out it was cancer, I mean, I think

everybody just started right then. You know, she's not gonna be

around much longer. . .actually, when she died I think I had a lot more
relief. There's some guilt in there too. And - because it was so hard

72
to look at her. Because she looked so deathly ill. She looked like a

concentration camp survivor. She started getting a bed sore on her one

heel, and - it was just a relief, I really think that's the biggest -- I
think that's how we all felt. We really felt bad, but we thought, she's
not suffering anymore (P12) .

Or as described by another participant in the 13 month group:

It did begin with the diagnosis. It was like someone pulled a rug out

from under me. . .I felt like I was a squirrel, you know, wandering

around, spending time with my mother I was doing the same thing a

squirrel would do before the winter comes, okay, hiding away. . . um. . .

memories, and times to look back on and moments and things that I

could never be able to have again (P1) .

Such descriptions seem to indicate that a person's grief very likely
begins at the time of diagnosis. The researcher did not directly ask
participants to describe the initial diagnosis, but rather offered a prompt
about how the diagnosis affected the family within the question about what
grief was like for them . It was the participants' consistently detailed
descriptions that emerged in the data that brought about this theme .

What Wgs Your Grief Like?

To develop the concept of grief and to understand more fully the grief
experiences of young adults , responses from three more questions were
collapsed and analyzed for emerging themes:

1 . Do you consider yourself to be grieving right now?

2 . How would you describe yourself today?

3 . How would you rate your grief adjustment?

All six participants in the 13 month group said that they were grieving
right now, with some differences in the FGS and NoFGS groups. In the
FGS group, all three reported feeling better, but having much more work
to do to reach acceptance of the loss:

I'm wondering. . .my target date was one year. I thought, things will

start feeling better in one year. At least a year. But I'm

wondering, is it ever going to feel better?. . .It's still fresh
. . .a year is still fresh. She's in every fiber in my being it seems like.

'73

Sometimes I think she's here with me, within my body and soul. And I
wonder if that's just because I'm part of her (P1) .

I think I'm a lot better now than I was six months ago. I think I'm a
little bit better now than I was three months ago . The increments
though, are very small I think, but I think I'm headed in that direction
. . . You know, I think I hurt as bad today as I did the day of his death,
but I think I hurt in a different way, or I handle it differently. It's
still a tremendous loss, but I'm beginning to be able to accept it in the
overall perspective of things. And I guess time has allowed me to do
that (P2).

Two of the three in this same group described their grief as it occurred
in "sections" or "quadrants, " as exemplified in the following passages from
the data:

The grief came in sections . . . so if she would lose sections of her

physical strength, or if her hands or feet went numb from the

drugs. . .when these things started limiting her, it was hard for her but

it was harder for me to accept my mom's limitations, because my mom

had always been able to do everything . So I would grieve my mom in

little pieces (P1) .

A part of me is submerged I guess. I've pictured myself. . .actually as

being divided into quarters and when I, when I see this picture of

myself, actually the top right quadrant is ah , is you know -- is gone .

I'm split basically into fours, and that piece is just gone. For some

reason that image is very vivid to me (P2) .

In the NoFGS group, two of the three expressed surprise that tears and
sadness were still so sharp , even at the one year point in their grief . The
third participant in this group stated, "I would say it's affecting me more
now than it ever has" (P4) . One other NoFGS participant who had lost both
parents to cancer just 2 1/2 months apart expressed that:

I'll probably be grieving the rest of my life. I don't think you ever

stop. . .grieving to me is just missing someone so bad. . .I don't think

you ever stop missing them. I think it gets easier, because it has.

Even though it's only been one year, it has. But it's still fresh in my

mind (P5) .

Two-thirds of the participants in the 24 month group stated that they
were grieving "some" , although all six also reported feeling movement in

their grief, and that the feelings were not as intense as the first year of

74
grief. One participant rated her movement in grief on a scale from 1 to 10,

going from a 6 1/2 to an 8 1/2 after two years (P9) . There were no notable
differences in the FGS/NoFGS groups in their descriptions of what grief
was like, and how they felt they were doing. Overall, most reported
feeling a lingering sadness, especially over little things such as certain
events or reminders of the deceased:

Well, I think any time I really sit down and really think about Mom and ' 1‘-
really talk about her. . .I still grieve her. But um. . . not really actively
grieving . Just when the situation comes up , or . . . you know there's
days that are hard. You know little things like that will make you feel
sad. . .and bring up the feelings. There's a lot of ups and downs. If .1
you were going to chart it, it was a real zig zag kind of a thing on a

daily basis. Some days would be really up and some down, and it just

went from that, to peaks and valleys to where it's pretty much a

straight line now (P11) .

-.‘_ r in;

_. .5.

I mean you have your days. I thought about it this morning. I don't
know if it was because I knew you were coming over or what
(laughing). On my way to work. . .I'm driving down the road and my
mind is wandering, and my eyes get kind of misty (P7) .

In sum, those in the 13 month group appeared to be actively grieving,
with some differences in those that sought formal support versus those that
did not. In the 24 month group, both the FGS and NoFGS groups reported
movement in their grief, and less intensity into the second year, but still a

sense of loss and lingering sadness.

Formal and Informal Sources of Support

To develop the concept of support, and specifically formal and informal
sources of support, six questions from the interview guide were collapsed
and the data analyzed to promote a better understanding of what helps
young adults grieve . These questions were:

1. What did you find helpful in your grieving process?

2. Did you find that some things were not helpful? If yes, what were
these things?

75
3. Describe your social supports.

4. Did you attend any grief support groups, a class or a group or
both? Any personal counseling or therapy to help you cape with this loss?

5. If you had to list one aspect, the thing that helped you the most in
your grieving process, what would this be?

6 . What has this interview been like for you today/ tonight?

Formal Supports

In the 13 month FGS group, two of three attended the Hospice Grief
Recovery Seminar, with one describing it as helpful and one stating that it
was interesting, finding the class useful upon reflection:

It was interesting from the standpoint of knowing that I was not alone .

I personally don't think I got a lot out of the class. . .I could

sympathize and empathize with those people who did discuss what they

were feeling. I guess one of the things that bothers me is that in

certain situations there's just nothing you can do (P2) .

The participant that did find the seminar useful stated that:

Uh. . . I guess validation. That the things that I was experiencing

were normal, if you want to use the word normal. That it was okay

that I didn't know what the heck I went to the grocery store for.

That I didn't feel like eating. That I couldn't sleep or that I

wanted to sleep all the time. . .it ran the gambit. I think the

class helped me to stop running, and gave me permission to cry. . .I

needed to cry and I hadn't done a lot of that (P1) .

In addition to the class, two of the three in the FGS group found
personal counseling valuable in processing the loss. One described
needing a more private forum for expressing grief, and felt that this was
due to the fact that she had had a miscarriage just 12 days prior to her
father's death. Therefore, she felt overwhelmed by a group setting. The
other participant who sought counseling for assistance with her grief felt

that it helped her in addition to the seminar, because:

76

It helped me to get more focused on what didn't work in my life. It
helps you deal with a lot of different things in a more healthy way, and
grief is one of them (P1) .

No one from the 24 month group had sought personal counseling, not even
the FGS group, for help with processing feelings about the loss.

In the 24 month FGS group, all three participants reported that the
Hospice Grief Recovery Seminar was helpful, providing this information as
a response to "what did you find helpful?" All three found the class useful
to them in their grieving process because:

You felt, boy when other people were talking about their experience,

you'd sit there, and wow, I can really relate to them. These people

understand. . .understand what I'm going through, and what we're
going through. Also to understand that people do grieve in different

ways. There's no right or wrong way to grieve (P7) .

I went through the grief recovery class and that helped some . It

helped me understand a lot about what I was going through . And what

I realized from that was the grief for my mother started the minute I

learned that she had the cancer . All the symptoms, um. . . emotional

ups and downs and everything like that started then. So that helped
me to understand what was going on (P8) .

It was helpful because I grew up in the kind of family where you can't
talk about how you feel. I was finally able to let them out after my dad
died, because of the group . It helped me learn that I'm not the only one
in this situation. Everyone has similar experiences, and somehow that
helps. You can remember good things with these people. . .you can talk
to grieving people about your memories and they know what that means
(P9) .

Only one in the six FGS participants had attended an ongoing grief
support group and still attended at the time of the interview. The most
valuable aspect of this experience for her was making friends who also had
loss experiences because she did not feel as alone in her grief (P9) .
Informal Supports

Other useful grief supports identified by all the bereaved in this study
were classified as "informal" supports, assisting in further development of

the concept "informal" support. Stylianos & Vachon (1993) state that it is

77
difficult to measure exact helpfulness of a specific support attempt .

Shumaker & Brownell (1984 as cited in Stylianos and Vachon) view social
supports as individual properties , interventions that must be seen as
helpful by the person receiving them in order to be supportive.

In the 13 month group all six expressed that friends were valuable
sources of support, in terms of their ability to listen and try to understand
feelings. The NoFGS group especially spoke about "select" friends as

meaning those who had experienced loss and grief and could better

W

understand without judgment the bereaveds' process. The following
excerpts from the data exemplify the value of friendship as an informal
source of support during the first year of bereavement, taken from both
the FGS and NoFGS transcripts as indicated:

I appreciate a friend who is just letting me be. . .just be where I'm at.
And for the most part, that has been my experience. But there's the
offhand comment, or you know, something that devalues my feelings .
And I'm really alert to stuff like that (PI, FGS).

Well, I honestly don't know if there is anything that is helpful. . .but I
am comforted in the fact that there are people that I am close to,
whether they be family or whether they be friends , who understand
how I feel and are willing to listen (P2, FGS).

My best friends, oh geez, there's like three of them, three really close
friends I could let my hair down with (P3, FGS) .

I had lost all my friends, telling 'em that I had to take care of my
mother, which made it hard to keep in contact, I just wasn't real good at
that. Really nothin' was helpful, not even friends. I mean I could talk,
but people are sick and tired of hearing, you know. . . they get tired of
listening to you talk (P4, NoFGS) .

But I, I, I, remember just feeling so much guilt, so much hurt, so much
sadness all at once, I felt I was losing my mind one time (crying). I
called up this other friend. . .I started bawling hysterically, and I said,
"I think I'm losing my mind. " She prayed with me, over the phone and I
remember feeling better. . .and that's when it hit me all of a sudden that
day and I had to run out of the room and call that friend. Sometimes I
just needed to connect, sometimes they would just listen and cry with
me. . .she had lost a lot of people too, so she knew what I was going
through. I mean the others understood and tried, but they couldn't

78

understand totally, because they had never gone through that

(P5, NoFGS) .

. . . some select friends. Because not everyone can deal with this. I
have a neighbor across the street from us. . .she has been an extreme,
extreme, source of strength for me during all of this. Extremely. And
she still is. She will sit and listen. She does not appear to be
uncomfortable. I can sit and say anything I wanted about this to her.
Cry - um - and she handles it very well. Also, one of the older ladies
there (at work), she's 50 and she's lost both her parents. So she can
sympathize. She's gone through the same thing. . .so I think that that
was definitely a factor in them being helpful to me (P6, NoFGS) .

In addition to describing the role of friendship as a source of support,
two-thirds of the 13 month and one in the 24 month group also noted that
"cliches" and "insensitive things that people say" were unhelpful aspects of
support coming from friends and/or co-workers. One participant's father
was well known in the community because of a career position. She found it
difficult to be anywhere in public for quite some time because of the well
meaning comments from administrators and staff. For example:

Things that didn't help were things that people said, but they didn't

know what to say, and I don't blame them. I found that when people

offer solutions , it's almost undermining to what you actually have

. . .These are people that never had anyone -- die. Day to day, dealing

with cancer, a close family member. These were administrators, other

(staff), it's just really -- they just didn't know what to say.

Um. . .things regarding Dad - a very simple, "I'm sorry" or direct eye

contact, or giving them a hug, things like that. . .that would be very

helpful (P2) .

The reader will recall that when the 24 month FGS group was asked
about useful grief supports, they all responded by describing the Hospice
Grief Recovery Seminar. When probed further for identification of informal
supports, there were no clear majority findings as was the case in the 13
month group. In the 24 month group , however, two-thirds of the NoFGS
participants reported that it was especially helpful to talk to someone who

listens, and understands. All three spoke of friendships:

79

My best friend --my neighbor and my lifeline (names friend).
She's good. She really is (P10, NoFGS).

I talk a lot. . .and I talked a lot about my mom. And my friends were
real good about listening to it. I have two very close girlfriends, one
that I've had since like 7th grade, and the other one it's just been kind
of childraising years kind of friendship . But they were both real good
about listening to me (P11, NoFGS) .

It was nice to know that I had more friends than I thought I did. It's
important to know that you're not alone . There are three women in the
office that I would talk to. They are close friends. And we all do that
for each other. And it helps, so you're not bottling it all up inside 71-:-
(P12, NoFGS). j

Two—thirds of the participants in this group also reported that sharing I L
fond memories of the deceased was helpful, especially noting that it felt .
good to be getting beyond the memories related to the parent's illness and
treatment. Participants in the 13 month group were not as likely to share
fond memories about the parent as were those in the 24 month group . It
seemed that the greater the amount of time that had passed since the
parent's death, the more likely participants were to describe fond memories
of the parent before the illness:

Well, we're trying to grow a garden. My dad was a very good
gardener. Things like that make me feel good. Ya know. . so I try to
talk about him in a tense like that. . .I have a garden now, and that
helps. It's something Dad loved to do. . .and somehow I feel I'm with him
when I'm doin' that, too (P10).

We include Mom in our life. Still very much. My kids have lots of
memories, you know, things will come up, and we do things like. . .you
know I always wanted to keep her alive to them. . .we talk about her a
lot, you know. We catch a fish, and we say, "Nah, Nana would say it's
too small. Throw it back. " And we believe that when you see the sun's
rays coming down, that that's people looking down from heaven. . . So we
include her. And sometimes it will make them cry, and that's okay, I
still cry sometimes too (P11) .

I think trying to remember the good things we've done. Vacations
we've gone on. . .thinking about those things, and thinking about
what good parents they were. That helps me the most (P12) .

. . . after the death it felt for so long that every memory of her was
(crying) being sick. All the bad things. And I did feel for a

80

long time that that would never go away, that I'd never get past
that (P6) .

When describing social supports, the most frequent responses from
participants in the 13 month group were family of origin and procreation
and faith including church, God, prayer, church community. Some felt the
support of family and the strength derived from their faith were invaluable
to them, although these were not majority findings. However in the 24
month group, all but one participant stated that a significant other, i.e. ,
husband/boyfriend and their own children were the most valuable "social
supports. " Some examples:

It wasn't hard to go on with my daily routines and things like that.

(Husband) was so supportive. . .when I think back on it I don't even

know what I did with (son) all those months (P7) .

My family. My immediate family. My husband and my children (P8) .

My mom is the main support in my life. My boyfriend. Also a friend

who lives downstairs. Being with my boyfriend has changed. We're a

lot alike, and we used to argue. Now we get along better. I think we

help each other. My attitude is more positive (P9) .

The other most common source of support given from this group was
"friends" which was discussed previously. It is also noteworthy that two
of three in the NoFGS found the Hospice mailings useful. Typically, the
NoFGS participants described themselves as "not a group person," thus an
indirect service such as a mailing seems to make sense for this group. Only
one participant in the 13 month group mentioned the mailings as helpful. It
was not a direct questionnaire item as it was assumed that all Hospice
families received the monthly mailings.

Identifying Othyer Sourcg; of Supmrt
When asked to list "one" aspect that helped them the most in their grief,

no majority responses surfaced in any of the groups, however a brief

listing is included because these responses may lend additional insight to

81
concept development and assist in answering the question, "What helps

people grieve?" The following responses, then, are from the 13 month
group: (a) can't give you just one answer, (b) time, for healing,
reflection, and perspective, (c) my faith, (c) my father taught me how not
to be afraid to die, (d) my strength in the Lord, therefore my ability to
reach out to others, (e) the support of what I feel are the people closest to
me, and (f) talking, having someone to listen. The 24 month group
indicated: (a) isn't just one thing, (b) friends (c) husband/boyfriend,
family, (d) myself, (e) being open and talking about it, and (f) being
present at the dying parents bedside; caregiving.

Finally, when participants were asked what the interview had been like
for them, all 12 participants reported that the interview had been a positive
experience, in spite of initial apprehension. Some expressed appreciation
for having had the opportunity to share their feelings, even some feelings
they perhaps had not shared previously. Common responses were, "It's
been a godsend;" "Someone to talk to, to be able to put it into words
again; " "The pain is brought back, but so are all the good memories, it was
helpful; " "It's been great to actually sit here and cry, to be myself and to
have someone listen, it's reassuring; " "Better than I thought; " "Feels
lighter, reflected on myself and my growth; " "Helpful to talk about Dad
and remember him." Two-thirds expressed feelings about how doing the
interview may also be useful to help the researcher to help other grieving
persons, and that this was their motivation for taking part in the study.

In sum, it appears that the formal grief support services -- the Hospice
Grief Recovery Seminar, the ongoing support group and personal
counseling -— were valuable to those who sought them . Friendship appears

to be a major source of informal support for the bereaved (9 of 12

 

82
participants discussed), and especially for those in the 13 month NoFGS

group, "select" friends were the most desired form of support. Because
friendship was consistently reported as being an important support for the
bereaved, the implication is that such friends may need to be available to
their bereaved friends especially during that first year of bereavement,
and know how to be supportive. Because of this finding, the role of
friendship in the grieving young adult is discussed further as a theme in

the next section .

Role of Friendship in the Grieving Young Adult

Rubin (1985) has written about friendship, primarily based upon in-
depth interviews conducted with people in every stage of life about the role
of friendship . She states that "friends are central actors in the continuing
developmental drama of our adulthood" (p. 11) . Furthermore, as a central
thesis to her book Rubin describes friendships and the developing sense of
self as an interplay, each influencing the other. Friends provide a
reference outside the family against which to measure ourselves . Friends
help us move through key rites of passage. In terms of the young adult,
they help with that process known as separation and individuation ,
assisting in the development of new rules , and adaptation to new roles .
Friends help heal the hurts and provide a haven for healing that perhaps a
family cannot provide for whatever reason. At the same time, Rubin
cautions, "friends choose to do what kin are obliged to do" (p. 22) .
Therefore a certain maintenance is expected in friendship , because it does

not have the element of permanence that a family holds.

83

The young adult who has experienced the death of a parent often
reaches out to friends for support during the grief and sub sequent
transitions to the loss, as expressed by Crenshaw (1990):

Friends are extremely important at any stage of the life cycle, but they

play a special role during the early adult years in terms of providing

support as young adults attempt to establish themselves into a secure

pattern of adult life (p. 137) .

Crenshaw discusses grief of the young adult for any significant loss in life ,
but emphasizes spouse and child deaths. He does note the importance of
other significant losses, such as the loss of a parent or a friend, and only
briefly offers insights about grieving when a parent dies . He does make
note of the grieving young adult who may find him or herself lacking a
supportive network of family and friends, and discusses community based
grief support groups as being useful supports during bereavement. Even
the most understanding families can be difficult to lean on when one of its
members has died, as there may be a tendency to "hurry along the process
of grief so as to shorten the period of agony and pain. Those who have
experienced it will appreciate that you cannot go around grief but rather
you have to go through it" (Crenshaw, 1990, p. 126) .

In the current study, it was pointed out that friendship played a vital
supportive role in the lives of the young adults who had experienced the
death of a parent. In light of what Crenshaw surmised about lack of family
support or inability to grieve openly because of family coping styles, it
would appear that friendship would be a most important avenue of support,
as well as formal grief supports:

I wish family would be more supportive. . .I have to go to a grief
support group to talk about this. They just don't want anything to do

with it. It's not okay to bring up the subject. I can talk to my mom
about dad, now, but not early on (P9) .

84

And there are those who for their own reasons just cannot attend a
grief support group or class, and for whom family members are not open to
talking about the loss, either:

. . .our family has never been one where we discussed our feelings a

lot. . .we knew it was there but we didn't know how to talk about it. . .We

haven't talked about my mom, my sister and I. I think we both think

about her, but it's something that we really don't say much about. So
to have somebody actually say, "tell me what you're feeling" is really
different (laughs). My sister went to a Grief Recovery class. It didn't
really hit me, anyway, until the second Christmas. I think it's just our
family. We don't get that emotional. We all tend to hold that side of us
in. I think I'm doing good, like I say, I miss my mom, but I think a lot
of my friends have taken up some of that, and my dad a little bit

. . .although he doesn't talk about a lot of his feelings (P12) .

For this participant, friendships provided the major source of support for
her in her grief. Rosenblatt and Bide (1990) maintain that where parent
loss is concerned, relationships with siblings are an important source of
support for "shared reminiscence" (p.206) about the deceased parent's

life . However if siblings have minimal interaction, or are cut off from one
another, an alternative source of support may be necessary for coming to
terms with the loss. Clearly, friendship may serve as a "surrogate sibling"
role .

Rubin (1985) cites Winnicott's concept of friendship as "transitional
objects -- people who join us in the journey toward maturity, who facilitate
our separation from the family and encourage our developing individuality
by providing the contact and comfort needed for the transition from child-
in-the-family to person-in-the—world" (p. 34) . She summarizes by stating
that friends are not simply replacements for deficits in family life, but they
are crucial to one's well-being as negotiating life's transitions would be
much harder without friends .

Based on the developmental stage theories of young adults (Erikson,

1966; Levinson, 1978) , Tokuno (1983) reported that friends play a major

85

role in the resolufion of developmental issues facing young adults , and
completed a subsequent study (Tokuno, 1986) to determine specific
processes by which that support is delivered. Outside of his work, it
appears that little research has been done on the role of friendship as
support for bereaved young adults. Based on the emerging theme in this
study that friendships appear to serve as an informal source of support

during grief, it is recommended that future inquiry be directed in this

_:-§l

area.

4'. A-M-“
1 _ _-. i . .

Developmental Loss: What is Lost and What is Left?

The period of young adult life from about age 20 to 45 is seen as a fime
for movement away from one's family of origin and into formation of intimate
fies with others (Crenshaw, 1990; Erikson, 1966) . The upheaval and pain
of losing a parent at this fime can perhaps be understood more clearly
within the developmental framework, i.e. , just when a person is beginning
to separate from the family, a loss occurs within that family resulting in
many painful emofions and subsequent adjustments (Schwartzberg &
Janoff-Bulman, 1991) . Crenshaw maintains that this loss hits hard,
because in the midst of decision making for establishing a secure pattern of
life, a young adult may sfill desire the support and encouragement of
parents. Feeling understood and cared for by significant others, such as
close friends and family, appears to be central to the young adult's ability
to cope with life (Winefield, Winefield, & Tiggemann, 1992) .

Changing Relafion_ship with a Parent

The situafion is further complicated as many young adults may be

working through potential unresolved issues with a parent (Kaltreider &

Mendelson, 1985) . The death of the parent may occur just as resolufion of

86
these issues is taking form and redefining of the relafionship with one's

parent is possible, as expressed by many of the parficipants in this study:

She was probably my best friend . . .even though she was my mother, it
was almost like we viewed each other as close friends , then the mother-
daughter relafionship came in second. I don't know if that makes
sense. We spent a lot of fime together, and did a lot of stuff together.
So it was not only losing a parent, it was a major loss for me as a
friend, and a big part of my life (P6).

. . .she was my best friend. She was the person I turned to when things
got really wild, and to me, seeming out of control, like there's so much
going on, and people are being a real pain in the rear, and you could
just go home, and you could get a hug, and you could sit and talk to
mom or not talk to mom. Just be in the same room. . .You know, just to
say, "it's okay, I understand. I love you anyway". . .she gave me a lot
of unconditional love and acceptance (Pl) .

My mother isn't there for me to tell her about the good things
happening to me, or for her advice (laughs). I was really, I think,
dependent on my parents, a lot. And I'm sfill dependent on my

dad. . .It has dawned on me how much my mom and dad meant to me. . .
And my mother, I'm sure she thought some of things her kids did
were dumb (laughs). But she didn't tell you that. She tried to be
there for you, and help you decide (P12) .

Mom and I had this real good friendship. It wasn't always a mother-
daughter relafionship, it was a friendship kind of a thing. And I could
always call her. . .we could talk about everything and anything. And all
of a sudden the person I could always turn to was not there anymore

. . .I couldn't call Mom up and say, "Well what do you think?" (P11) .

But it seemed like she was old enough to be my grandmother. She was
36 when I was born. There seemed always to be a generafion gap
there really. . .I wished I'd had a mother around that could really
understand me. Now she's gone. And it's like when I got to my 30's,
and I really felt I could communicate and have a real friendship with
her, really understanding her more, she was gone (P8) .
Loss of Opportunifie_s
Crenshaw (1990) also points out that in addition to this incredible sense
of personal loss, the young adult may also mourn the loss of opportunifies .
A theme emerged in the present study that was termed " developmental
losses, " the most prominent being the parficipants' descriptions of what the
parent will never witness in their children's lives, such as marriage or

birth of a child. Over and over parficipants spoke about the sadness they

87
felt because their children would not have the influence of their parent as a

grandparent. One-half of the parficipants in the study had children, and
this group tended to focus on family memories from fimes gone by involving
the deceased parent. They also spoke of the effect the death had and
would confinue to have on their children. Those that did not have children
felt sadness because the parent would not be present at the births of
children they might be having, and of the three single parficipants, one
expressed sorrow over the fact that her mother could not be there to help
her pick out a wedding dress. Some of the following passages from the data
exemplify these lost opportunifies:

Even at the ripe old age of 32, I can sfill feel like an orphan.

. . .I've wanted children since I was a child. I mean I wanted to be a
mom, and I guess I wanted to be a mom because I had one of the best
mom's there ever was . And we were looking into ferfility treatments
and so forth right around the time of the diagnosis. I couldn't bring
myself to . . .further pursue it because at that time it stood right smack
between me and what I wanted -- it was like this baby will never know
my mother (P1) .

I just got to thinkin' you know how she was at my brother's wedding.
She was at my sister's wedding. She'd never be at mine (crying). She
won't even be there to help me plan it, or pick out the dress, or
anything like that (crying). Or if I ever have kids, she won't even see
them (P4) .

(upon hearing the diagnosis). . .Then he dropped, and the first thing
he said was, "I won't be able to see (name) go to kindergarten." These
two were more like a father and a daughter. A grandparent and a
grandchild. They were very close. They were bonded like you
wouldn't believe (P3) .

Dad didn't talk about. . .he accepted death as far as he wasn't afraid to
die, but he wasn't ready to die because um. . . (name) was his only
grandchild. And that part is sfill hard for my husband and I somefimes
because boy, (name)'s getfin' to the age where he can do so much, and
things that Dad always said, "Oh I hope I'm around to see". . .And he'd
say, "But I'm not ready to die, because I want to see (name) grow up"
(P7) .

The thing that's the hardest is that my kids will have no grandma.
They only have one grandpa (P8) .

‘Z'UBI

88

She didn't get to meet him. Well she'll never get to sit on grandpa's

lap. He always had nicknames for his grandkids. . .And he didn't even

know I was pregnant. He did get to come to my wedding and see that.

He wasn't too healthy, but he was there (P10) .

. . .and I couldn't have children. . .and she was always, she felt bad

about that. She wanted a granddaughter. And I could tell, I think

that she was a little more upset when I had . . . my hysterectomy than I

was. She wanted to have those grandchildren. I miss her for that. I

can't talk to her about it (P12) .
Return to the Holistic Model of Gri_e_f

It may be clear by the previous examples from the data pertaining to
both the redefining of one's relafionship with a parent and grieving the
missed opportunifies one may have had with the parent, that the focus
seems to be on what has been lost and what remains . In relafionship to
Schneider's (1984) theory described in Chapter I, in the first phase of
grief, the person may be coming out of the shock of grief and entering into
acfive grieving, with an acceptance and awareness that this loss is really
happening. They may ask: How is it possible that this has happened?
There is a realization that the loved one really has died and is never coming
back. Movement into the feelings resulfing from this realizafion may bring
about a variety of coping mechanisms by the grieving person . There may
be an attempt to limit awareness as gradual confrontafion of reality occurs .
The person begins to absorb the fullness of what was lost. In the second
phase, the person may begin to enter into a fime of healing, gaining
perspecfive on the loss . There is a recognifion of personal limits and a
need to identify supports. There is usually an increased self—awareness
and a search for meaning in life. The grieving person might ask, what
keeps me going? Who gives me strength? What remains? What is the best

and the worst of this experience? There is movement toward acceptance of

89
the loss, perhaps passively at first, but with firms, one begins to accept

that life will never be the same.

Based on all of the major findings of this study thus far, it appears that
the data lend support to these first two phases of the grieving process as
described by Schneider.

M org: What is_lo_s_t?_ Participants were interviewed at
approximately 1 and 2 years following the death of one or both parents.
Most appeared to be in the phase of inifial awareness (shock; believing that
this was happening). All of the 1 year group and two-thirds of the 2 year
group provided vivid descripfions of the diagnosis, the illness, and
treatments . The 1 year group expressed that they were actively grieving
and the 2 year group still had lingering sadness with certain memories and
events triggering grief reactions . There were clear descriptions about
experiencing difficulty believing the reality of the loss:

Um. . .I felt numb for so long. . .and (crying) -— a disbelieving type of
thing, like it wasn't real. And I think I have to say, even, can I say
this -— it might sound stupid -- even being a year, I sfill have moments
when I can't believe it really happened (crying). Sfill deny -- um, I
don't know - It was (pause) devastafing. I guess the full impact of it
didn't really sink in at first. I think it took awhile, even after the
funeral type of thing, it was just, it was something like I never
experienced before (P6) .

It's been a rollercoaster. I didn't figure I'd start this so soon

(crying). When I found out that you know it was a long fime before I
could even say the word cancer. . .It was very difficult for me to accept
and sfill is. I honestly believed that as bad as things were, that he was
going to get better. I just wouldn't allow myself to think that ah -- you
know, he was, this was my dad. He was immortal (voice cracking and
crying hard). So the acceptance for me has been really difficult and
still is (P2) .

And I went through right off the bat, it could be polyps, um, a
bleeding ulcer, and then he got to cancer, and we both -- that's

when I first felt it. I thought, no. It's that pulling back not wanfing
to face it. . .and scream NOOO (loudly) and holding my arms out and just
you know, just push it all away. I was listening, but I couldn't hear

1. ‘rrms‘m‘ mg

9O

him (the doctor). Down. Not a high and low. I kept pushing things
away. Nope, this is not going to happen, we're going to beat it. . .It's
so hard to accept this (P3) .

Actually, at the fime, I really didn't even think about it. I mean I just
put it on the back burner. . .Well, it clicked. I faced reality. I'm one of
those kinds of persons who tries to do that really well. I knew in the
back of my mind that she wasn't gonna make it anyways. . .cuz they kept
having more cancer found (P4) .

Not that I live in the past so much, but I just kinda, my imaginafion
runs wild somefimes. I think what they might be doing. People don't
even have to look like them. . .somebody walking down the street and for
a second - then I realized you ding dong. I did this just the other day
with my dad, I mean the guy didn't even look like Dad. I hear their
voices. Somefimes I can just hear them calling me. . .I'm not hearing
voices. . .I'm just picturing them. I know they died. But I don't, I
didn't want to accept it at first (P5) .

I don't believe that he's dead. It's almost two years now. And it's
rough. . .I sfill, sometimes, have a hard fime believing that Dad's gone
(P9) .

And after awhile, my dad just said, "okay this is it, I'm gonna die."
And you know, it's like you try to tell him, no, no, no, you're not
gonna die. Well you know, you don't have fime to grieve. There's no
fime. You can't think of that. You can't. Your thoughts are you're
gonna help him. I was concerned with getfing him up and out of that
hospital. He's coming home (P10) .

In addifion, the bereaved expressed examples of attempfing to cope
with the reality of the loss by holding on, e.g. , keeping busy, trying
harder, being overly optimisfic:

I would push it out of my mind a lot. I would keep busy. I would
work (P5) .

And starfing a new job. Maintaining. And believe me I was aware that I
needed to maintain that job . It was almost like I had to stuff the
feelings down, and the job almost kept me sane I think. Cuz I knew I
had to pull it together from 9 to 5 or whatever fime I was there (P1) .

. . . somefimes it's hard to accept that when you are this devastated and
have had a loss like this that life goes on. Everyone else is just doing
their thing -- and having kids at the age they are, involved in school

and such, I was forced into having to keep up with it and do this type
of thing. And it actually at the time was good for me, although it was

hard to make myself be involved. I had moments where I couldn't just

continually focus on how devastated I was feeling (P6) .

91

And you try to think posifive during that whole time. And you, you
try not to say anything that would be a real downer for him, or
negafive . So see , I don't really think that reality hits until after it's

all over because you live in that kind of mode through all of that. . .after
he's been diagnosed and so you know you didn't want to bring him down
yet he's preoccupied (P7) .

I remember thinking, knock it off, you're being negafive. Your dad is
dying, you have to walk in there with maybe a happy face, once would
be nice, and a hug and a kiss. . .(P3).

. . .my mother would tell me he has so long to live, you know. So then
you kind of deal with that. You just (crying) you get up and you go to
work. You - I don't know somefimes I'd put it on the back burner, and
yet it's there. Ya know, and then you go visit him and you see him and
you know that - okay, this man is not gonna be here , maybe tomorrow .
So then you leave again, to go to your family, and you just wonder
okay, am I doing enough for my family? Maybe I shoulda said, "I love
you" more today (P10)

I keep busy. I'm always busy. I stay away from my mom's house,
somefimes, sfill, it's just too hard to go there (P9) .

And some demonstrated letting go by diminishing the true significance
of the loss or attempfing to escape or "pull back" from life:

Basically I locked myself up in the house and I got an answering
machine and if I didn't feel like answering the phone, I didn't

answer it. . .My family doctor diagnosed me with depression. . .and I
didn't feel like I was a person anymore. And emofions were like every
which way, up and down. It's like I didn't know who I was anymore

( P4) .

It's hard to get up in the morning. It's hard to laugh. There were
fimes during all of this, that I just didn't want to keep going. I did
because basically I'm a happy person, and I love people. And because
of the children (she worked with children), I love children. The
children kept me going (P5) .

As her death got closer, I guess I kind of pulled myself away. I
found it hard to communicate. . .I guess the main symptom I have with
the grief and this whole process is that I have very little tolerance for
people anymore. . .If something rubs me the wrong way or gets on me I
pull away from a lot of pe0ple. I kind of cocoon myself. . . " (P8) .
Theme two: What is left? There were also clear examples in the data
represenfing phase two of Schneider's theory, "What is Left?" One might
priorifize differently, show an increase in self-awareness, and search for

meaning in life:

:i_l;..L‘_L_-._":‘_‘:": g

92

It's probably made me more mature in a way, and more independent.

I think it's made me focus on really some of my priorifies, what's
important what isn't important, definitely, to me personally. And I
think I've also found that —- just not to sweat the small stuff

anymore, it just isn't important (P6) .

I really want to live life the way I want to live it . I don't want to have
to do things I don't want to do. I want to delve into things I enjoy,
things that make me happy. . .And there's things I'd love to do, but
always been afraid to do them. And I've decided to forget it, I'm going
to do it anyway . Try to keep on talking myself into following through ,
but. . . (P8) .

Myself. My own growth and confidence in myself has helped me.
It's just that I have grown in that I have more self-control ( P9) .

I think I'm a little less afraid to do things. And I don't know why that
would be. I suppose maybe because you find out that you're stronger
than you thought you were (P12) .

I am a little more relaxed. I mean I used to be one of those people, go,

go, go. and I especially nofice that I priorifize differently. I don't

push myself, I don't push my husband as much as I used to. . .I am
creeping back into it, now that it's the second year, I can feel my old
self returning (laughs), but really, I do think some of it will sfick with

me (P7) .

Theme three: What is possible? And finally, phase three of the theory
asks the question, what is possible? The bereaved truly begin to integrate
the loss, with a shift in focus from what was lost to what is now possible.
There may be a discovery of personal potenfial versus limits to one's
capabilifies . Perhaps a renewal of energy occurs , with a focus on the
growth that may have occurred from the loss . Transforming the loss
involves the person placing the loss in a context of growth , with a focus on
how he or she has grown, and achieving higher levels of understanding
and acceptance of the loss (Schneider, 1984) . The parficipants in this
study did talk about how they had grown from the loss , however, truly
transforming the loss, if it happens for an individual, appears to be

something that occurs more than 2 years from the fime of the major loss .

93
Building Upon the Transformafive Potenfial of Grief

To develop the concept of transformation and to build upon Schneider's
theory (1984; 1994) of the transformafive potential of grief, the following
quesfions were collapsed from the interview guide:

1. Which things will never be the same?

2. Do you feel like you have grown or gained in any way because of this
loss? If so, can you talk about this growth? How specifically have you
grown?

In the 13 month group , two-thirds reported that holidays will never be
the same with the loss of family rituals and tradifion . Other common
responses were "I will never be the same" or "nothing will ever be the
same" (two-thirds) . Some differences existed between the FGS and NoFGS
groups when asked if they had grown or gained in any way because of the
loss. Specifically, the 13 month FGS group all spoke about growth in some
way, expressing an increase in personal strength, in facing fears, and in
just feeling more confident for having made it through the first year:

I think facing two of the biggest fears in my life and coming to the other
side of them, that I've gained some personal strengths and some inner
strength. And some calmness. . .there's something about looking it all
right in the face and realizing that there's not too much on my scale
anyway that's going to come close to rocking my life and turning it
upside down. Ah, I guess a lot of acceptance, a lot of growing up, I
guess. And I've found out some things about myself that I didn't know
were there. . .that I can take care of myself (P1, FGS) .

Oh yes. It's ah, you know it's an experience I wish had never
happened. It's a bump in the road that you have to learn how to
negofiate. It's taken me awhile. . .There will be some quiet fimes that I'll
spend alone rather than being able to share it with him (father). And
there are a number of significant things that have changed. I think one
of the other things it's done is to sensifize me a little bit to some of
what's going on in other people's lives. You know, ah, I'm reminded of
John Dunn, that no man is an island. And don't ask for whom the bell
tolls, it tolls for thee. And I understand what that means now. . .I think
I see things a little bit differently now. And that someone's death,

“” u.-.; j

94

whether they are known to me or not does diminish me. . .that gives me a
different perspecfive about the order of things, and the importance of
things, and so on (P2, FGS).

I didn't think I could get any more faith than I had before this

happened, but I know I have. I've grown much more closer to God.

And I thought I was already there. . .you get strength. I'm not afraid

to die. And my dad taught me that. . .it was very reassuring. . .I'll

never be the same. You realize we all have to grow, and I don't like

change. That's part of life, it's part of growing up. I understand all
of those sayings now. But a part of me is gone. That went with my
dad. And that hurts. . .I feel like I have a part of him in me. You
know he took a part of me with him (P3, FGS).

Parficipants in the 13 month NoFGS group had some difficulty
understanding the quesfion in terms of what was meant by " growth . " This
could be related to the finding that two of three in this same group were
surprised that even after 1 year feelings of grief were sfill sharp .
Furthermore, one participant in this NoFGS group was really just
beginning to actively grieve, and the other one who had lost both parents
just 2 1/2 months apart was overwhelmed by these quesfions. Perhaps
" growth from grief" would seem odd, or at least further away for those who
may be entering awareness:

I'm not the same. I felt like I was this crazy person. I mean one

minute I'm way out over here, and the next minute I'm there. . . (When

asked if she has grown or gained:) Golly, I really don't know how to

answer that one. . . (P4, NoFGS) .

Another possible explanafion is that for those not seeking grief
educafion, i.e. , formal support, perhaps the grieving process is less
understood and "growth" may not be a familiar opfion to them. Sfill, two of
three parficipants in the NoFGS group did express that they handled their
feelings in grief better than they thought they would, and did experience
some movement:

My faith has grown, it is stronger. My self-confidence, because I can

handle it better than I thought I could. (When asked about things that

will never be the same, the parficipant could not answer the quesfion.
Appeared to be acfively coping, and could not respond) (P5, NoFGS) .

95

(crying) Part of me wants to say everything. I mean it is so
different without her. . .I don't think anything as far as holiday-
wise in any respect will -— it will never be the same. . .I would

have to say probably that I've gained in the respect as far as

going back to my family situafion -- that I feel now I can say what
I want to my father without having to worry about this coming back
onto my mother or any of that type of conflict (P6, NoFGS) .

In the 24 month group , all but one reported that the holidays will never
be the same with loss of family rituals and tradition. All but one
parficipant (both FGS and NoFGS groups) reported a similar theme: they
had grown more responsible for themselves and for their own lives . This
included more independence in terms of letfing go of dependence on parents
in areas such as emofional or financial, and setting priorifies differently.
The following passages from the data exemplify this growth:

Oh, I think responsible about a lot of things. My dad. . .was usually
there to help us. And not that my husband - we relied on him all the
fime for things, but. . .he was easy to have around as far as doing
things for us and getfing things done, and taking care of certain
things. Or to go and ask questions. So as far as being responsible,
we've had to take on that for ourselves. . .he's not here to do it, so
we've had to do that now (P7, FGS) .

Not ever being able to call them up, or even visit them. I don't think
I'll ever be the same (P8, FGS) .

On my own, yea. I've learned how to save money. I take care of
myself. I pay the bills on fime. I'm on my own and more responsible
(P9, FGS).

Not that I wanted to. . .I gotta do a lot of things myself. I can't
depend -- I was the baby. I'm spoiled rotten. And my dad, it was a
you know, now I'm not it. Whatever I wanted I basically got

(P10, NoFGS).

So yea, you grow up a lot when you lose a parent. Because you don't
have that person to fall back on. You can't put things over on them
anymore. You know, you can't take your problem and give it to them
like you did all your life (laughing). . .you're grown up. Figure it out,
you know? You have to grow up . And I thought I was really grown up
before she died (laughing). You know? I thought I was very grown up
(P11, NoFGS).

_ u

96

Holidays. Those were real important to us. . .just certain little rituals .

And you miss that a lot. Holidays are the hardest. . .I really think I've

even grown some. . .and I don't know if it's just that I'm more confident

. . .I don't know, I really don't know why (P12, NoFGS) .

The above excerpts lend support to the first two phases of the theory,
and perhaps show signs of movement into phase three -- reformulafing and
transforming the loss. However, examples were not as clear pertaining to
how the bereaved may have integrated the loss , where they may be asking
quesfions like, (a) what must be done to get on with my life?, (b) how does

this loss fit into the rest of my life?, and (c) are there other ways to look at

wdfii—ufi} iq

this loss? Schneider (1994) has described "reformulation" as a time of
"self-empowerment" when the person begins to focus on his or her own
potenfial, extending self-trust and self—awareness. A renewal of energy
may emerge from the grief, resulfing in taking risks and discovering things
about oneself. Transforming the loss involves in part, even more growth ,
by accepting this new idenfity and extending oneself even more by being
open to all new experiences. For example, the person may place the loss in
a context of growth, having moved out the awareness phase, i.e. , the
intense feeling stage where the he or she is focused on coping, and may ask
(a) how have I grown from this loss? and (b) how has my view of the world
changed? The parficipants in this study were just 1 and 2 years past the
loss, and particularly those in the 1 year group appeared to be in a coping
phase, beginning to gain some perspecfive and acceptance on the reality of
the loss. Schwartzberg and Janoff-Bulman (1991) examined grief and the
search for meaning by adolescents and young adults at 3 years past the
death of a parent, and found even at this point in their grief, those that
had found a way to "explain" or "understand" the death of a parent did so

by holding on to old assumpfions and beliefs. Their study did not examine

97
the growth potential of grief, and they concluded with a call for new

directions and conceptual paradigms to aid in the understanding about
grief. Therefore, with an effort to confinue building upon the theory of
the transforrnafive potential of grief, further study is suggested, focusing
perhaps on persons where fime since loss may be 3, 4, even 5 years and
beyond.

Overall, the parficipants in this study seemed to be moving into a stage

of redefinition of self, and a realizafion of what life will be like without the

r—--’-.‘--*1
I‘

familiar anchor points. They seemed to be almost surprised that they had
made it through the last year or two, expressing that they were "doing
okay, better than I thought I would be" (P1, 2, 5, 6; 7-12) . At the same
fime and as stated, many observed a sense of feeling stronger and more
competent, however, there was sfill a sense that the detachment from life
as it once was and the realization that things will never be the same was
sfill in process, even for those in the 24 month group . The parficipants
appeared to be just moving into the next phase of the theory about "what's
possible? " As Schneider has stated, transforming the loss involves the
person integrating the emofional, physical , behavioral , cognifive , and
spiritual aspects of him/herself in order to gain higher levels of
understanding and acceptance of the loss. This holisfic, growth-oriented
model of the grieving process led to the development of the Response to
Loss Inventory ( RTL) , an instrument where each concept in the model has
been operafionalized and is being subjected to construct validafion as
development of it confinues (Schneider, Deutsch et a1. , 1992) . The
researcher made the decision not to administer this inventory to
parficipants in this study because follow-up work is somefimes necessary .

Nonetheless, it would have provided insight in terms of assessing just

98
where the participants are with viewing the loss as impetus for growth.

Clearly the RTL Inventory would be useful both in research and clinical
settings to confinue building upon the transformafive potenfial of grief ,
and to offer a long term evaluation of outcome for grieving persons .
Malinak, Hoyt and Patterson (1979) conducted a preliminary study
about grief reacfions of young adults whose mean age was 32 .4, and fime

since loss was 3-20 months in which "favorable growth-oriented aspects"

”.1
.I

from loss emerged as a theme. All 14 of the parficipants in their study

Tr“- . ~
L

reported that the loss of a parent was painful, and half stated that they
had realized some benefit or experienced growth from the loss. Similar to
the findings in the current study, these gains included an increased sense
of strength and self—reliance, as well as a greater caring for friends and
loved ones, and a "deepening of their appreciafion of existence" (p. 1155) .
In addifion, more recent research has been conducted examining the
potenfial growth aspects of bereavement (Calhoun 8 Tedeschi, 1990;
Ulmer, Range, 8 Smith, 1991) and changes in life meaning following
bereavement (Edmonds 8 Hooker, 1992; Schwartzberg 8 Janoff—Bulman,
1991) . Overall, findings in the current research were supported by these
studies , where posifive changes were associated with bereavement , such as
respondents' descripfion of themselves as stronger , more competent ,
independent, and better able to face life crises. It appears that further
research is needed to examine a person's sense of meaning and purpose in
life as a posifive outcome of bereavement . Also noteworthy is that not all
persons "transform" grief posifively . Some may choose to limit their
awareness (coping phase), perhaps remaining there for a lifefime
(Schneider, 1989) .

CHAPTER V. MISPERCEPTIONS CLARIFIED

The researcher has described the mispercepfions that exist in the field
about useful grief support services (Chapter I) . In short, there is
documentafion that percepfions do not always match what the professionals
view as being supporfive to the bereaved, and what the bereaved idenfify
as being useful supports (Conway, Hayslip, 8 Tandy, 1991; Corr 8 Wass,
1991; Levy 8 Derby, 1992; Stylianos 8 Vachon, 1993) . It will be recalled
that a nafional study conducted by the Nafional Academy of Science

(Osterweis et a1. , 1984) failed to uncover conclusive evidence of

awry-“f:

measurable benefits from Hospice bereavement programs . Perhaps such a
study was conducted too early in the Hospice movement, as bereavement
programming particularly in many of the smaller Hospices has only begun to
solidify and demonstrate consistency since the mid-19808.

The researcher's professional experiences in Hospice as a facilitator
within Grief Recovery Seminars provided the opportunity to personally
witness "evidence of measurable benefits. " However anecdotal evidence
does not usually convince funding sources about program effecfiveness.
Defining program goals and designing effecfive programming requires
evaluation of services. Are current offerings of Hospice grief services
adequate and cost effective? Because of the increasing need to justify
program expenses, a decision was made to include this "big picture" issue
in this dissertafion as a precursor to a long-term career goal of conducfing
bereavement evaluafion research within Hospices . Two supplemental data
collecfion techniques were ufilized to obtain perfinent data that would lend

insight into Hospice programming: interviewing professional grief service

99

100

providers, and analyzing Hospice bereavement support quesfionnaires .

Results from these analyses can be found in the following secfions.

Matching Perceptions

Contrary to the reports in the literature, misperceptions did not exist
in this study when comparisons were done between the professional grief
service providers and the bereaved. The focal point for comparison was
between professionals' and bereaveds' perceptions of useful grief ;
supports. Overall, the professionals' viewpoints matched what the
bereaved in this study had reported as helpful grief supports. The
following is a summary of matching percepfions.
What Helps People in Their Grigfg

All four professionals strongly advocated group support for the
bereaved in need. The value of the group setting was described as the
educational component of support that offers validafion , normalizing of
feelings and comfort to the bereaved in knowing they are not alone.
Qualifiers were placed on bereaveds' ufilizafion of group support by stafing
that group work is not for everyone and may not be enough for some
people. It was seen by two professionals (E1, E2) as imperafive to offer
follow-up to the persons in groups , making available the help and the
resources for those who do not find what they need in a group . The
person with spiritual issues and concerns was provided as an example by
three of four professionals (E1, E2, E3) as someone who would need one-
on-one processing because such an issue was viewed as a highly personal
concern, where shame might be attached for quesfioning one's faith. Such
one-to-one processing was seen as something that could be done with a

friend, a counselor, and/or a therapist. The point is that group work is

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not always appropriate for everyone. The FGS participants, both 13 month

and 24 month groups, were previously quoted as saying that the Hospice
Grief Recovery Seminar and other support groups were useful in terms of
the provision of validafion of feelings and identificafion with other grieving
persons, thus percepfions matched (Chapter IV). Those in the NoFGS
groups gave the following reasons for not attending the seminar or groups:

There was none that I knew of. I wasn't even informed that anything
was offered. . .I probably would have tried it. . .I'm not really into like
my sister says, "having people picking your brain. . . " (P4) .

I've thought about it. I'm just not a person that can go and talk about
my deep down feelings with a group of people. That's too scary. I've
considered it though (P5) .

I did talk about the one (Grief Seminar). But since then, yes, I've
thought about it, but I sfill think, ahhh - I don't think so. I think
back then the fiming just wasn't right for me. And I'm just not a group
person. . .I thought I might try a support group. I've heard it's a good
program. But I felt it was not for me. Maybe the programs like that
are very helpful for a lot of people. I think I'm not good as a group
person - sharing feelings in the group. I also think I'd feel isolated,
or how can I say this - so many people who go to these things are
people who have lost a mate . . . not a parent, not a child . I would like to
talk to people with the same loss as me (P6) .

No. Nope. I was big enough. No, I can do it. . .I guess I deal with my
own things within myself. . .I just do things myself. You know, it's just
much easier to do it that way. Why bring everybody else into it, you
know?. . .Somefimes I have a hard time expressing what I want to say,
and within a group, I wouldn't be able to -- I'd figure I'm taking up
maybe too much of the fime . Maybe somebody else has got something
else. . .more to share that they need that. I just eh, if I need to get
away I'll just take a walk out back in the woods. . . (P10) .

One professional (E1) stated that it was parficularly useful but not
mandatory when the "listener" has processed a similar loss. What is most
important, according to all four professionals, is that the bereaved are
provided a forum in which to "tell their story" without judgment, to review
the relafionship with the deceased , and to be able to say farewell . And
finally it was the suggesfion of one professional (E1) to differentiate

between "primary losses" and "secondary losses, " the former of which

102
represent the actual death of the person, and the latter represenfing those

losses that are a result of the death , usually transifional issues that can

inhibit movement through the grieving process. Those with the need for

help in processing secondary losses may need addifional, more focused

support to "plummet the depths" of their grief, at their own pace. Specific

techniques were recommended (E4) to help individuals and families cope as

follows: (a) relaxafion tapes; music, (b) videos about diseases, treatment 3, ,

opfions, grief and loss educafion, (c) humor, ((1) aggressive release, and ,

(e) journaling . ii
In sum , it was the consensus of all four professionals that grief

educafion provides validafion and normalizes feelings , which was also

expressed by the bereaved who attended the seminars or groups. Groups

were seen as most useful, but not for everybody, and somefimes one-on-

one counseling may be more helpful depending on the type loss and

adjustment issues . There needs to be flexibility in provision of grief

support services in the form of groups, and for those desiring long term

counseling and therapy. Sometimes both forms of support are needed,

where group work is done in conjunction with private counseling (Rognlie ,

1989) .

Hospice Program Clarity: Exisfing Services and Future Direcfions
The reader will once again recall the study completed by the Nafional
Academy of Science (Osterweis et al. , 1984) , where, according to their
findings, the crux of the issue within Hospice bereavement services seems
to be about clarity in program goals. In an effort to gain clarity,

Beresford (1987) reduced the issue to two simple quesfions:

103

1 . Are the benefits of Hospice bereavement services therapeutic or
humanitarian?

2 . How does the Hospice insure that the few who are at risk are properly
idenfified?

Following an analysis of the four interview transcripts of the
professional grief support providers, a summary was compiled containing
overall suggesfions for revision in the current 13 month follow-up program
in Hospice bereavement, as well as future direcfions for both Hospice based
and community based grief support services.

Ila—spice Bereavement 13 Month FOHOWJIfi Suggesged Revieione

Existing services are funcfional and programming decisions have been
based on that, with confinuity in service offerings over the last 5 years.
However , there is always room for growth , for improvement . There needs
to be flexibility in provision of grief services.

Three of four professionals suggested extending the 13 month follow-up
to those who need confinued connecfion . Some bereaved are prematurely
"dropped" from the mailings, and lose that sense of connecfion from
Hospice. Others may be at a place where terminafion of service feels right,
but for those who are not, an extension of service should be an opfion.

One suggesfion entailed reframing the last " milestone" mailing that goes to
grieving individuals and families just after the one year anniversary date of
the death of the loved one . Perhaps making it an opfional termination
would be preferable.

In addifion it was suggested that the inifial staff assessment visit to
bereaved families he offered more frequently and later in the grieving
process (it is now offered at 4 weeks past the death). For instance,

personal contacts could be offered roufinely every 3 months throughout the

104
year, versus just that first fime call and visit where a staff member leaves

with the message, "call us if you need anything." Grieving persons often
do not ask for help . It was also pointed out that the staff person doing the
assessment visits would have to have adequate assessment skills to detect
those bereaved who are classified "high risk. " Of the four professionals
interviewed, two believed that the role of bereavement coordinator could be
filled by a person with at least a bachelor's level educafion in human
services, and training in the grieving process. All four believed that if a
programming decision were made to go beyond assessment services, for
example, hiring of an in-house therapist, then at least a Master's degree
with clinical training would be mandatory job requirements .

There was a return to the age-old quesfion about whether Hospices
should offer community referral/ community services or just work toward
supporting their own bereaved families . Working within a bereavement
team was one suggestion for addressing this issue, where each professional
realizes the value of self-care and what his/her limitafions are as a care
provider. It was suggested that services offered match available staff for
provision of such services .

Is there an "interdisciplinary team concept" within Hospice? It may be
just that, a concept. Is it a reality? Are Hospice staff persons working as
a team? Hospice bereavement services should not be billed as an "after
dea " service, but rather based on the assumpfion that grief begins with
the diagnosis. It was suggested that Hospice staff posifions be
interchangeable as much as possible, with equal emphasis placed on every
component in Hospice . Currently there confinues to be a separafion of
bereavement services and spiritual care , in which these areas are "over

there" and the pafient care aspects are "over here." One goal might be to

105
confinue to work at integrafion within Hospice , making a commitment to

truly creating an interdisciplinary team approach to pafient/ family care .

Whatever decisions are made about community outreach , there appears
to be a consensus for the need to priorifize offerings, and aim efforts at
educafing children. This could happen perhaps most efficiently within
schools and was viewed by the professionals as a preventative effort . One
long range goal would be injecfing at an early age the idea that grief is a
normal process, a response to a loss, and that it is okay to feel, okay to
cry, and to talk about those feelings. Such programs would not only teach
children how to process feelings of grief, but such a focus would begin to
bring into the picture the parents and families, as well as the teachers.
This systemic perspecfive has another long range goal of making a societal
level change with lasting affects.
Future Directions

All four professionals envisioned a "Grief Center" -- two supported a
hospital based center and two supported a Hospice based center. This
"Grief Center" would be a comprehensive center, catering to the needs of
both Hospice families, if Hospice based, and community service referrals.
These services would be offered by a team of professionals trained to work
with the grieving people, and they in turn would confinue empowering a
strong core of interested volunteers , teaching them about peer support .
In addifion , outreach would confinue in terms of empowering church
congregafions by training members about how to help a grieving friend.
Empowering other professionals by continuing educafion efforts about the
grieving process would also be a component of the center . In-house
counseling and therapy would be included as part of the services, as well.

And finally, as discussed previously, progranuning in the schools would

106
permit grief educafion to be delivered directly to children, injecfing at an

early age the idea that feelings are okay, and grief is a normal process.
Ongoing children's grief support groups within schools , where parents are
involved, would also be designed and implemented by staff at the center.
These ideas were presented to the researcher by all four professionals
envisioning the ideal for provision of grief services. Having a "Grief
Center" would consolidate current grief services in conununifies where
redundancy and overlap sometimes occurs. It was speculated that offering
services under just one roof would be less confusing to grieving people as
well .

In sum, the percepfions about just what it is that helps people in their
grief seemed congruent between professionals and bereaved persons.
Professionals in one community believed that current Hospice bereavement
services are adequate , as demonstrated by confinuity over fime , however ,
the consensus about revision within specific areas of bereavement
programming may indicate the need for program evaluafion . Future
direcfions implied the need to consolidate grief support services , perhaps
by creating a community grief center . The following secfion offers further

evidence that Hospice bereavement follow-up services are effecfive .

Documentary Analysis: Bereavement Support Questionnaire
Following the death of a loved one, the Hospice bereavement coordinator
routinely contacts surviving family members , explaining available
bereavement services . These support services include in part, placement
on a monthly mailing list whereby letters and accompanying arficles
containing information about the grieving process are mailed to the

bereaved . In addition , during the inifial telephone contact an in-home

107

assessment visit is offered and available bereavement services are
explained, such as the Grief Recovery Seminar or the annual Memorial
Service. This follow-up program confinues for 13 months after the loved
one has died. At the termination of services, the bereaved are asked to
complete a "Bereavement Support Questionnaire (Appendix F). Souter and
Moore (1990) completed an evaluafion of a bereavement support program for
survivors of cancer deaths and found that the program was beneficial to
survivors and very much appreciated. Similar procedures were followed
for this analysis.

The Hospice supporting this research has seen a steady increase in
service from 1987 to 1992, with an average of 181 pafient/family units
served annually . Following data collecfion for this study, an analysis was
completed for the 205 quesfionnaires returned over this 6 year period,
showing a response rate of 16 . 5 percent. Because the response rate was so
low, a decision was made to include all quesfionnaires in the analysis ,
regardless of age, type of loss, or time since death. Results from this
analysis follow.

Monthly Mailings: Letters and Arficles

The first secfion of the quesfionnaire asked the bereaved to evaluate
the monthly mailings and arficles. Parficipants were asked about the
usefulness of the letters and arficles following the death of a family
member, and whether this informafion helped them to cope with their loss.
Respondents overwhelmingly indicated that such material was helpful. A
summary of responses can be found in Table 4. Some respondents chose
not to answer certain items, thus a code of 0 was given for missing data

(M.D.).

 

 

108

Table 4: Bereavement Support Questionnaire:
Evaluafion of Hoepice Monthly Letters and Articlg

Usefulness of Responses Assistance with Responses
Letters/Articles Coping

Very Helpful 166 A Great Deal 132

Somewhat Helpful 35 Somewhat 61

Not Very Helpful 2 Very Little 2

M. D . 2 M. D . 10 T
TOTALS 205 TOTALS 205 E

The next secfion of the questionnaire asked respondents to identify any
mailings that may have been especially helpful. Categories were developed

from the responses (M.D.=105) and can be seen in Table 5.

Table 5: Bereavement Support Quesfionnaire:
Specific Hospice Mailings Idenfified as Helpful

Mailing Responses

All Mailings Helpful 61
Feelings 10
Grief Experience 9
Anniversary Letters

/Birthday Cards 7
Getfing Through Holidays 7
"Like hearing from a friend" 6
M.D. 105
TOTALS 205

Few responded to the quesfion about whether any of the mailings were

nonhelpful (M.D.=151) . Those who did reply simply gave a "no" and only

109
four gave specific reasons about why they disliked the mailings. Only one

from that group stated that the mailings "reminded them of the death."
Overall it appears that the bereaved found the monthly mailings helpful.
Selected Hospice Services

The next section of the quesfionnaire asked about the usefulness of
selected Hospice services, using a Likert-type scale to obtain this
informafion (5=outstanding; 1=poor) . Missing data were coded in the same
manner when this was possible, i.e. , the quesfionnaire composifion made
missing data difficult to assess, as not all respondents ufilized all services.
Among those who did respond , greater numbers reported that the monthly
letters and monthly arficles were "very helpful," with the next highest
response reported as "outstanding" (Table 6). All of the other services
included in this section of the quesfionnaire were rated most often as
"outstanding, " with the excepfion of volunteer contact in which "very
helpful" and "outstanding" were reported equally.
Mabout Addifional Services

The final secfions of the quesfionnaire inquired whether bereaved
wished to receive addifional services , or if they would like a call or a visit .
For those who responded (N=141) , 131 did not wish to receive any
addifional services , and only 10 wanted to confinue receiving the mailings .
As far as receiving a phone call or visit (N=164) , 127 responded no, 32
indicated they would like another visit, and 5 said they would like to
receive a phone call. Overall, it appears that these bereaved were at a
point in their grieving process after the 13 month follow-up where
additional services from Hospice were not desired . Most gave a positive

evaluafion, and expressed no need for further service.

 

110

Table 6: Bereavement Support Quesfionnaire:
Usefulness of Selected Hospice Services

Response Scale

Type of Out— Very Average Somewhat Poor M . D .
Service standing Helpful Helpful

Monthly 65 73 32 2 0 33
Letters
( N=172 )

Monthly 59 71 29 4 0 42
Arficles
( N =163 )

Other 58 42 15 2 1 n/a
Printed
Material
(N=118)

Grief 34 24 6 1 0 n/a
Recovery
Seminar
( N =65 )

Memorial 24 14 5 0 2 n/ a
Service
( N =45 )

Staff Visit 60 25 4 1 O n/ a
(N=90)

Volunteer 28 28 5 3 1 n/a
Contact
(N=65)

*Bereaved did not attend/receive this service.

Written Comments by the Bereaved
Many respondents provided written statements about the usefulness of

Hospice services , some of which are quoted as follows: "I have nothing but
praise for Hospice of Muskegon. " "Somefimes certain things came to mind,
I thought I was crazy . But after reading your letters I understood those
things were normal. " "They reminded me that how I feel was normal, that
fime heals, and pain will fade. " "I wish the article on how to write a journal

would have come sooner. " "The very fact that you didn't forget me on my

ALG-i-hlilfi -. ‘

 

111
birthday, on Bud's birthday, and on our anniversary and Christmas, and

today, it's just one year." "The fiming was perfect! The letters helped me
understand my grief process and support it. " "It was helpful to know that
the feelings I was having were not unusual. The programs and books were
very informative. " "When I started receiving things from Hospice, I found
them very hard to read and they just made me feel uncomfortable. I felt I
had to grieve in my own way, in my own fime, and I had to do it -- nobody
could help me." "I knew your letters helped me a great deal this past year,
but I think I'm just beginning to realize how much. " There were many such
written comments by the bereaved , most of which were in support of the
follow-up services at Hospice . Those responding negafively provide clues
for service revision as well.
Sum_m__ary of Quesfionnaire Results

In sununary, it appears that the majority of those responding to the
quesfionnaire did find Hospice bereavement support services useful
following the death of a family member . A pattern of responses develoPed
when respondents were asked to rate the usefulness of specific services ,
with the majority of respondents rafing them as "outstanding" or "very
helpful, " and only a small number reporfing "poor. " Most written comments
provided by the bereaved offered praise for the program services.
Com arin uestionnaire Results to Partici ants' Res onses

One major objecfive of this study was to explore formal and informal
sources of support for grieving persons, in part by asking them, "What
helped you in your grief?" It seems that the responses of the bereaved in
this study parallel those responses of the Hospice bereaved families who
evaluated bereavement services over the past 6 years . For this

comparison , the researcher has decided to focus primarily on the Hospice

112
Grief Recovery Seminar, since the majority of the FGS groups in this study

described this parficular Hospice service as helpful. A brief discussion
will also follow about the Hospice monthly mailings.

Hospice gr_ief recovepy seminar . The analysis of the quesfionnaires
revealed that those who took the Hospice Grief Recovery Seminar found it
outstanding or very helpful to them as a source of formal support. The
bereaved who took the Hospice Grief Recovery Seminar in this study (in
the 13 and 24 month FGS groups, 5 of 6 attended) also reported that it was
very helpful . It should be noted that the ongoing bimonthly support group
that Hospice currently offers was not being offered during the fime these
evaluafions were completed . It is a new service at this Hospice .

Hospice monthly mailing . Families ufilizing Hospice services are
automafically included in bereavement follow-up services , a part of which
involves receiving the monthly letters and articles . These mailings are a
major part of that follow—up support, regardless of whether the bereaved
seek formal supports. Therefore, it was decided not to count the mailings
as formal support, because all Hospice families receive them unless they
indicate otherwise, and very few do so. The researcher has decided to
include the summary results about the monthly mailings, because over half
of the quesfionnaire itself focuses on evaluation of these mailings . As
noted previously, the bereaved overwhelmingly reported that these
mailings were useful to them during their grieving process. In this study,
when asked what helped them grieve, one-half, i.e. , three of six of the
FGS parficipants who had received the mailings menfioned them as helpful.
This was not a direct quesfion during the in-depth interviews , however ,
findings were consistent with the quesfionnaire results in that the
bereaved seem to find the monthly mailings very useful in their grief.

 

 

113

Comparing Quesfionnaire Results to Professiona115' Reeponsee
Another major objecfive of this study was to explore potenfial

 

 

mispercepfions between the professionals and the bereaved about just what
consfitutes helpful grief support services . Part of this explorafion
involved asking professionals about programming goals and future
direcfions in Hospice bereavement services . Overall, the professional
group indicated that the Hospice 13 month follow-up services are effective ,
but need revision . Contrawise , the bereaved responding to the
questionnaires seemed safisfied with the program services , and the

majority stated that they did not wish to receive any further services at the
end of the first year . The bereaveds' evaluafion supported the current
Hospice follow-up program.

One parficular area where revision appears to be needed is around the
issue of terminafion of services . The professional group seemed to be
concerned with premature " dropping" of the bereaved after the first year
following the death of a loved one. This problem could be addressed by
offering options to the bereaved to continue with further service if they so
desired. As it is, a closure letter is sent referring to a "major milestone"
having been reached. Perhaps some bereaved persons are only just
beginning to grieve after the first year, and such a letter would be
discounfing to their feelings. There is certainly room for growth,
especially around the content and appropriateness of the monthly mailings .
This concern, however, did not surface in the analysis of the
quesfionnaires .

Summarizing the Comparisons
The general research quesfion in this study was, "What helps people in

their gri . " The researcher chose to compare the responses of the

][’_‘—‘~"“T‘“.‘""T‘l

 

114
bereaved in the study to those bereaved reporfing via the questionnaires

about what helped them grieve. In addifion, the professional group
responses were compared to the bereaved reporfing via the quesfionnaires ,
to explore and clarify misperceptions about what consfitutes helpful grief
support. The researcher included analysis of the quesfionnaires as a way
to further explore the general research quesfion with more than just the
majority findings from the in-depth interviews . Comparing the interview
data with the results from the quesfionnaires further lends credibility
(validity) and transferability (generalizability) to the study. Overall,
bereaved persons in this study and those responding via questionnaire
reported that Hospice bereavement services were helpful to them in their
grief . Although professional parficipants had some suggesfions for
revision , as outlined in the previous secfion , support for services was also

evident .

CHAPTER VI. SUMMARY AND CONCLUSIONS

This chapter contains a summary of this study, recommendafions for
future research, suggestions for improvement within Hospice bereavement

programs, refining of conceptual definifions, and concluding remarks.

Summary

This qualitafive study was designed to explore the young adult's grief
experience following the death of a parent to cancer, with a focus on ‘1...
discovering what constituted helpful supports for the bereaved in this 1
stage of the life cycle. The primary purpose for conducfing this study was .
to begin to assess "what helps people grieve?" with specific concerns for
what helps young adult's grieve . A second purpose was to explore the
transformafive potential of grief (Schneider, 1989) . An attempt was made
to learn more about the formal and informal sources of support that the
bereaved identify as helpful to them in their grief process, and to clarify
potential mispercepfions about provision of grief support services .

Data collecfion consisted of in-depth, semi—structured interviews of 12
adults, all caucasian, 11 females and 1 male, ranging in age from 23 to 43
years old . The average age was 34 years . ParfiCipants were recruited
from a Hospice database in Western Michigan . Interviews were completed
between September 14 and October 29, 1993. Time since death was varied
at 13 and 24 month intervals; within two groups of six participants, three
had ufilized formal grief support services, three had not. As a
supplemental data collecfion technique , four professionals involved in the
provision of grief support services were also interviewed as a way to
explore what is/is not being reinforced between gatekeepers and the

bereaved in terms of grief support services. Documentary analysis was

115

116
also used as a supplemental data collecfion technique by tabulafing

responses for bereavement support questionnaires collected by the Hospice
providing support for this study. This analysis was completed in part, as
a way to encourage this Hospice to ufilize valuable, existing data that could
prove useful to them in planning and developing future bereavement
support services .

Major findings revealed insight about the grieving experiences of young
adults. All of the participants in the 13 month group reported that they
were actively grieving, while lingering sadness confinued for those in the
24 month group . Since the majority of parficipants were seemingly in the
coping stages of grief, assessing the growth potenfial from loss of a parent
was difficult. It appeared that more time was needed to fully reflect on how
one may have grown or gained from such a loss . In addifion , formal
support assessed as useful was primarily in the form of support groups or
seminars . Themes that emerged from the data were the role of friendship
in the lives of grieving young adults , and other developmental loss issues
unique to young adults, such as the changing relafionship with a parent as
one matures and the loss of opportunifies such as witnessing the birth of a
child. Such themes imply special needs for resolufion of loss at this stage

in life. Future research directions are discussed in the next secfion.

Contribufions to the Theory of the Transformafive Potential of Grief

By ufilizing an inducfive approach in the confinuing effort to build
upon the theory of the transformative potenfial of grief, four hypotheses
emerged from the data. A discussion about their relafionship to the theory

and suggestions for future research follows .

--.._._._ Arum;—
II ’1
A I

117

Hypotheses Generaged from the Data

1 . The gradual physical deteriorafion of the parent parallels
acceptance of the reality that the parent is going to die. A theme emerged
about diagnosis, illness, and treatment as they related to one's grief
experiences . Most notably , it appeared that grief started with the
diagnosis of the cancer. Participants and their families witnessed the
limitations that disease gradually introduced into their lives . A once
vibrant, healthy, and energetic parent is now bedridden, unable to
perform daily self-care acfivities. Perhaps the parent is unable to
communicate due to the effects of the disease . These related losses , or
"secondary losses" as described by one professional (E1) , appeared to be
very real, occurring before the actual death of the parent. According to
another professional (E3) , bereavement services have been typically billed

as "after death" services within Hospice. Perhaps the Hospice team needs

to be aware of the deep sense of loss a family member may be feeling before '

a pafient actually dies . The Hospice team, parficularly the nurses and
social workers, need to have knowledge of the grieving process, implying
that Hospice truly does funcfion as an interdisciplinary team. In turn,
bereavement coordinators may be able to visit pafients and family members
before a death occurs, offering grief support and educafion prior to death.
This sense of loss that family members may be experiencing is often
referred to as "anticipatory grief" and according to Buckingham (1983)
"grief over the anficipated loss of a loved one may begin as soon as the
diagnosis is confirmed and prognosis revealed" (p. 167-68) . In terms of
theory building, this hypothesis clearly implies that the young adult would
be acfively grieving (phase one), coping with the reality of the impending
loss of the parent. It appears that grief begins at the fime of diagnosis and

 

118
that the survivors gradually adjust to the reality of losing the parent

during the course of the illness. These concerns could be addressed in
future evaluafion research of Hospice services that involve both the pafient
and survivors .

2. Grief educafion promotes healing. Persons who ufilized formal grief
support services seemed to understand the intense feelings of grief ,
parficularly when comparing those in the 13 month FGS to those in the
NoFGS. For example, in the NoFGS group, those sfill surprised by their
sharp feelings at one year were also somewhat uncertain about what the
researcher meant by "growth" from grief . If there is no knowledge about
the grief process, such as the concept of validafion or normalizing feelings,
then it may be less likely that "growth from gri " would be understood as
an option, as the person may be feeling confused about the range of
emofional reacfions that occurs during grief . Perhaps grief educafion
facilitates movement through the grieving process . Future research
suggesfions include confinued evaluafion studies of the effectiveness of
support groups, and determinants of an individual's decision to seek
support (Levy 8 Derby, 1992) . In addifion, interviewing participants at 3
to 5 years and beyond their loss may provide greater insight about the
growth potenfial from grief .

3. Following the loss of a parent, friendship provides support for the
grieving young adult, especially during the first year of bereavement. Of
the parficipants, all six in the 13 month group and three in the 24 month
group expressed the value of friendship as an informal grief support . In
cases where family support may be lacking, or if a particular coping style
of a family discourages open expression of feelings , then it may be that

friendship provides a nonjudgmental forum for expression of feelings .

T—mrhi-Jm Inst-o

 

5. +—

119

Especially noteworthy was the finding that it was preferable for some to
share only with "select" friends who had also experienced a similar loss.
Death of a parent seemingly robs one of a sense of security and forces a
facing one's own mortality (Kennedy, 1991; Schneider, 1994). Since
certain adjustment issues may occur prematurely or "off fime" for the
young adult, friends who have not experienced similar losses may be
uncomfortable listening to the grieving friend (LaGrand, 1985) . Stylianos
and Vachon (1993) describe the support of family and friends as a
"naturally occurring intervenfion , " if it is done sensifively:

Family and friends should be encouraged to allow the bereaved to

express his or her feelings rather than shutfing them off in attempts to

avoid the helper's own feelings of impotence or insecurity, which arise
if the helper feels unable to act, help, or "do something" to make the
bereaved person well. . .Potenfial helpers might be assisted to gain
insight into how their own grief, needs, and desires might cause them
to become too invested in the vicfim's recovery. . .they might be advised
to listen to the bereaved without feeling obliged to make comments or

offer advice (p. 406).

In terms of the developing theory, it appears that supporfive friendships
could facilitate growth from grief. Suggestions for research include
exploring the effects of bereavement at different developmental/life cycle
stages, particularly for those in the young adult stage, and the role of
friendship as an informal grief support for the grieving young adult
(Tokuno, 1983; 1986).

4. Family support promotes healing. In light of the fact that five of six
parficipants in the 24 month group , regardless of whether formal support
was sought, stated that husband/boyfriend and/or children were
supporfive to them, it would seem feasible to invesfigate which family
variables assist in grief recovery . Inifial data analysis in this study
suggested that open conununicafion promotes movement through grief ,

however , the pattern that emerged in the first three parficipants started

120
and ended there. No commonalities or majority findings emerged about how

families might be supportive to each other beyond menfion of a significant
other. In fact, some of the research reviewed suggests that bereavement
may have a detrimental effect on and cause addifional strain within family
and/or marital funcfioning (Guttman, 1991; Lavee, McCubbin, 8 Olson,
1987; Vess, Moreland, 8 Schwebel, 1985) . Future research about how
family members cope with bereavement might be conducted ufilizing family
ecology, family development, family stress and crises, and/or family
communicafion theories . For example , it would be of interest to examine
family coping strategies, e. g. , open or closed communicafion and their
relafionship to healing . Clearly movement into phase three of the
transformafive theory, "what is possible?" could be facilitated or inhibited
by family members, all of whom grieve uniquely.

In sum, the hypotheses that emerged from the data will serve as useful
guides for further inquiry into (a) the young adult's grief experience
following the loss of a parent during this stage of development, (b)
idenfificafion and development of formal grief support services for the
young adult following loss of a parent, (c) the importance of friendship as
a source of informal support for bereaved young adults, and (d) family as a
source of support for bereaved young adults .

Addifional Reeearch Ideas

Suggesfions from previous researchers were incorporated into the
current study by including in the interviews quesfions in the following
areas (as recommended by Malinak et a1. , 1979; and Moss 8 Moss, 1983):
(a) early and recent parent-child relafionships, (b) the effects of death on
the family system, (c) changes in relafionship with parent just prior to

death, (d) loss of a mother versus loss of a father (e) social supports and

121
the life situafion of the parficipant (i.e. , did they live with the parent),

and (f) personality of the parent . Inclusion of these recommended content
areas did not reveal majority findings or produce common themes in the
current study. However, suggesfions for future research include the
effects of death on the family system , and particularly how families may or
may not assist one another in the grieving process.

Because demographic stafisfics indicate an increase in the frequency of
divorce throughout most of the 20th century (Lamanna 8 Riedmann, 1994) ,
future studies might address how death of a parent influences adult
development when the parents are divorced . This situafion could further
complicate the adult child's grieving process. An increasing number of
adult children will be confronfing this reality in the future, especially if
the current divorce rate remains stable .

Lastly, although it was not a majority finding , some of the parficipants
in this study spoke about the importance of their faith in God and how this
helped them in their grief. Some spoke of faith as their saving grace,
feeling that it was the most important support that helped them to endure
the grief. Future research could address the spiritual aspects of grieving
both in terms of support for the bereaved and training issues for the
clergy who are often called upon to provide support services .

Suggesfions for revision within Hospice bereavement programs were
also provided , with a recommendafion that evaluafion studies be conducted
to examine the effecfiveness of group support, and the determinants of the
decision to seek support. As a result of the review of literature , other
suggestions for future research became evident in areas related to this

study, such as gender differences and grief reacfions, the effects of

 

L-

m-

 

122

mulfiple loss on grief adjustment, and examinafion of a person's sense of
meaning and purpose in life as a posifive outcome of bereavement.

A return to the data in search for negafive instances occurred
repeatedly. The decision was made to discard a hypothesis if three or more
instances could be found that negated it. This search did not produce
examples that may have warranted discarding of any of these emerging
hypotheses. Ideally, an independent reviewer could also be asked to
search for such instances, a common pracfice in qualitafive methodology .
The researcher chose not to enlist an independent reader for the scope of
the dissertafion, as a thorough search for negafive instances was done both
during analysis and while wrifing the content. It is recommended that the
hypotheses be ufilized as guidelines for future inquiry in the area of
parent loss and young adult development , as well as in evaluafion of
Hospice bereavement services .

Suggestions for Hospice Bereavement Services

Recommendafions emerged about clarity in program goals and
development of effecfive grief support services with Hospices:

1. To extend the 13 month follow-up for those bereaved who indicate
that further service is desired , versus automafic terminafion at a specified
point.

2 . To offer more frequent follow-up in the form of personal contacts ,
beyond the inifial staff assessment visit or phone call.

3. To insure high risk bereaved are recognized as such, specify
appropriate training for Hospice bereavement staff, differenfiafing between
assessment skills and therapeutic skills, or offering a "balm" versus an

intervenfion .

123

4 . Increase bereavement staff to service rafio as decisions are made to
expand services. Exercise self-care and recognize limitations as a care
provider .

5 . Work at integration within Hospice making a commitment to truly
creafing and maintaining an interdisciplinary team approach to pafient and
family care .

6 . Priorifize community outreach efforts , making children's
bereavement services high on the list .

7 . Ideally, work toward the vision of a comprehensive "Grief Center . "
Such recommendafions are directed toward professionals working within
Hospice bereavement services , as well as policymakers , therapists , clergy,
social workers, nurses , and other professional caregivers involved in the
care of the dying and the bereaved. It was previously suggested and
subsequently confirmed that evaluation of bereavement program

effecfiveness is needed within Hospices.

Reframing Concepts

Further development of key concepts occurred which aided in refining
the meaning of formal and informal support and the value of such supports
for bereaved young adults. The concepts of grief and loss in the context
of young adult development emerged as a theme, alerting researchers and
those who interface with bereaved young adults that loss of a parent at this
stage in the life cycle may mean more than the devastafion of the loss itself ,
presenfing adjustment issues, recognized as "secondary losses" or
"opportunities lost," e.g. , one's child never knowing and loving a

grandparent .

124
In addifion, insights about the concept of transformafive potenfial were

gained, confirming that fime since loss plays an important role in assessing
the growth potenfial of grief. The parficipants in this study were
approximately 1 and 2 years past the death of a parent, with the majority of
them acfively grieving and coping with the reality of the loss. Some
showed movement into the third phase of grief as outlined by Schneider
(1984) in the theory, however, examples of transformative growth did not
surface in the data for persons at the 1 and 2 year points past a major loss.
Future studies examining the concept of transformative potenfial need to
consider fime since loss as an important variable and include participants
who are 3, 4, and 5 years past the loss. A longitudinal study design would
be useful in which researchers and/ or therapists repeatedly administer the
RTL Inventory (Schneider, Deutsch et al. , 1992) to clients within a
specified age group. It might also be useful to include in such a design
persons who have and have not ufilized formal grief support services .

The researcher has speculated about why there was a lack of validation
in the data for the third phase of Schneider's (1984) theory. Some of these
reasons are:

1 . Perhaps grief is not a transformafive process. For some people,
perhaps coping with the loss involves denying it or avoiding it for self-
protecfion . Whether consciously or unconsciously the choice may be to
remain in a coping stage for as long as possible. Denial does play an
important role in coping with grief , offering protecfion when reality is
overwhelming . Remaining in this stage , however , clearly inhibits
movement into the other phases of grieving , such as reformulation and

transformafion .

125
2. "Growth" from grief may mean different things to different people.

It may be a cultural bias to assume that one must "work through" certain
stages of the grief process. Certain people may not ascribe to the " grief
work hypothesis" (Stroebe, 1993) . There are perceptual and cultural
definifions implied when asking a grieving person about " growth" from
their grief. The young adults in this study may not grow from their loss
experiences in the way it was conceptually defined as "transformative
potenfial. "

3 . Hospices utilize an adaptafion or coping model of grief that
theorefically empowers the bereaved to ufilize their own resources to accept
and cope with a loss . A risk assessment is completed on bereaved persons
and if one is at high risk, an intervenfion or plan of follow-up care is
completed. For example, those who cope by avoidance may need help in
confronfing and adjusfing to the loss, while those who may be overwhelmed
are encouraged to get away from their grief for awhile. The basis for use
of this approach, as reported by Parkes (1993) , is that "the right help
given to the right people at the right fime can reduce physical and mental
symptoms and improve the quality of life before and after bereavement" (p .
99) . What is neglected here is the posifive side of grief, i.e, "What is
possible?" or Schneider's third phase of the transformative theory. The
data in this study , however , would validate this "preventive intervenfion"
model where those who are at risk receive appropriate counseling and
support. Therefore , although the data did not fully validate Schneider's
three phase theory, they do support other exisfing models that would be
useful in the development of grief support services .

4. Schneider, Deutsch et al. (1992) suggested that the RTL Inventory

would be useful as a research tool for bereaveds' risk assessment and

126
growth potenfial from loss, as well as for offering clinical assistance to

therapists as a long term evaluafion of outcome for grieving persons . It
became evident that greater insight could have been gained had the
researcher ufilized the RTL Inventory as a way to assess the growth
potential from loss for the bereaved in this study. In future studies, an
interviewer/researcher could ask more questions pertaining to the third
phase of the theory that addresses the existential nadir of a grieving
person . One could study the "Awareness" (coping) secfion of the current
RTL Inventory and generate quesfions about existenfial issues . It should
be noted that the parficipants in this study were interviewed just one fime,
thus it was difficult to ask certain indepth , probing sorts of quesfions
without the safety to explore the answers . In addition, due to geographic
distance, the researcher was not available for ongoing follow-up meefings
with parficipants had that need arisen. A future study could address
these issues by incorporafing into the study design two interviews with
each parficipant. More fime together might allow for a greater sense of
rapport to develop between the researcher and the parficipants . Follow-up
work could be done more readily if the researcher's geographic locafion was
near the research site . Living and working in a community where one has
had the opportunity to network with other professional people , especially
clinicians who work with the bereaved, would indeed be an asset to the
researcher. One could be more certain about making referrals for
parficipants should such a need arise.

5 . Finally, this study explored the grief experiences of young adults
within specific age parameters. Perhaps lack of support for phase three of
the theory is embedded within the developmental or life cycle issues of

young adults, 1. e , it would seem that loss of a parent necessitates

127
movement into self-reliance. Some of the parficipants in this study

reported that they felt more confident and more mature in terms of
assuming adult responsibilifies for themselves and their families. Yet most
did not discuss existenfial issues such as changes in the meaning of life or
a renewed focus on possibilifies versus limitafions. Perhaps the age of or
stage in life of the participants reflects their lack of concern for or
unfamiliarity with the transformafive potenfial. Their focus may be more on
attainment of age-appropriate tasks such as establishing relafionships ,
attending to career goals, and meefing the needs within the family. One
wonders about the responses that would come from an older sample, e . g . ,
mid 503 to mid 608, when asked about growth from losses. Such a group
may be in a more reflecfive state , approaching refirement and encountering
many different types of losses. Thus, age may influence one's ability to
transform losses.

In sum, while speculafing about the reasons why the third phase of the
theory was not validated by the data more questions emerged: (a) Is grief
a transformafive process? (b) What is meant by "growth from grief?" Are
perceptual and cultural biases inherent in the assumpfion that one must
" grow from" or "work through" grief? (c) Does the familiar coping model
(often used by Hospice bereavement programs) overlook the posifive side
of grief? Are current grief support services empowering the bereaved to
"transform" loss, by considering "what is possible?" (d) In the context of
the interview design, can researchers really safely address the existenfial,
indepth quesfions that may open up even more issues for the bereaved? Is
this ethical? (e) Does age influence one's ability to transform loss?

In spite of the quesfions that emerged , further clarificafion was
obtained in defining the concept of transformafive potenfial and building

128
upon the transformafive theory of grief . It appears that there are ample

opportunifies and ideas for future studies as the researcher's long term
career goals will involve bereavement evaluafion research and further

tesfing and refinement of the RTL Inventory.

Concluding Remarks

It is because parficipants allowed the researcher to enter their world ,
relying on words and nuances in expression as primary data, that concepts
and themes emerged and theory was further grounded. A select group of
grieving young adults have assisted in contribufing to the knowledge base
by providing detailed descriptions about what grief feels like and what
helps or does not help following the death of a parent . Objecfives were
met, so that the researcher now possesses not only a deeper understanding
about the young adult‘s experiences of grief and an idea of what
constitutes useful supports , but also greater clarity about bereavement
program development within Hospice . Themes emerged about anticipatory
grief, the support of friendship and developmental loss issues unique to
young adults . For the researcher , whose current age is the average age of
parficipants in this study, greater insights were gained about the special
needs of the young adult who loses a parent. In parficular, that loss of a
parent can mean loss of a sense of safety, loss of opportunity, and loss of
idenfity:

The dying and death of a parent trigger a process of inifiafion,

somefimes one that is long overdue . In the basic pattern that applies to

all initiafions, we feel tortured. We die over and over again as we have

to let go of old beliefs, structures, and ways of being. We die to who

we were . . .the death of a parent, in true initiatory fashion, shakes up

the very foundations of our lives . Daily roufines are disrupted ,

assumpfions about life and death jolted , values challenged (Kennedy,
1991, p. 55—56).

129

Conducfing interviews with same age bereaved was truly a profound
experience both personally and professionally. With these concluding
thoughts, the researcher as the "research instrument" would like to change
roles and express in the first person how complefing the interviews
affected her. On a personal level, I was deeply moved by the arficulafion
of thoughts and the heartfelt expression of feeling that was displayed so

 

openly by the parficipants. This was particularly true because as the IT:
researcher/interviewer , I was only part of their lives for the duration of
the interview . Listening to their stories caused a return to the pain of my .4.
own grief just after my father's death . At fimes it was difficult to remain in

the role of researcher because I felt more like a comrade . As they shared

their experiences, many commented that unlike most people, it was easy to

talk about their grief with me, and that they welcomed the opportunity to

share their stories with someone who understands . Such disclosure creates

a bond that is special indeed. There need not be a history, for the common

bond of losing a loved one provides a forum for trust. I felt privileged to

be a part of their journey.

On a professional level, the interviews helped to validate my hunches

 

about the need to confinue educafing society about grief. The urge to
educate occurred during an interview every fime one of the parficipants
seemingly felt shame about and apologized for crying and showing emofion.
I am even more mofivated to strive for the long term goals stated within this
study, confinuing with the development of effecfive grief support services
and educafing society about grief as a normal reacfion to loss versus
something to overcome . I am also more aware of the developmental issues
for young people beyond my own experience, with a deeper understanding

of how losses may affect one's ability to move through the stages of living .

130

Losing a parent in one's 303 is different than losing a parent in one's 50s.
Future research needs to include an examination of bereavement reacfions
at different developmental/life cycle stages .

Losing a parent may thrust a young person into an awareness of his or
her own mortality that triggers a quesfioning of the very core of one's
being. Schneider (1994) examines grief and loss by weaving together a
developmental model and the transformafive theory of grief; the effects of
loss and the potential for growth are examined at every stage in the life
cycle. Such a base includes a detailed descripfion of the young adult's
adjustment process , where a quesfioning of the value of old assumpfions
occurs, and new, more realisfic assumpfions about living emerge. Part of
the process of healing involves accepfing the reality of what is lost, and
the need to rebuild what is left in a way that is meaningful. Schneider
views loss and grief as universal experiences and, potentially, our most
frequent path toward transformation and growth:

When we are grieving , what is the catalyst that leads us to personal

growth and transformafion rather than to depression and stagnafion?

Obviously , having someone or something to believe in is a crifical

ingredient that holds us on the growth side of grief 's chasm , even if

only by the skin of our teeth. This someone or something, however,
isn't just anyone or anything. Some people step on our fingers and
cause us to lose our hold and our hope . Even well-intenfioned friends
and therapists can do that. Others would bring out in us strengths we
didn't know we had. Who is it we find helpful? What is it they do or

don't do? What are the factors which seem to help us find a

transformative path through our grief? (1994) .*

This study was, in part, designed to address these quesfions and to
generate new ones, as a way to contribute to the body of knowledge that
exists about the grieving process, and because of a scholarly commitment to
the ever-evolving process of theory building, empirical research , and
pracfice .

(*‘See next page).

 

—‘ Ix .- M‘_._i
L

 

131

 

* The in press manuscript was used throughout the preparation of this
dissertafion . However, the actual book release is one day following the
deadline date for this dissertation . The year is provided, but not the
actual page numbers for this passage from the text.

_:.n“.._‘._ A

 

.‘L

 

 

APPENDICES

APPENDIX A

Explanafion of Hospice Regulafion Procedures in Michigan

Hospice is no longer a "movement" but rather an ongoing aspect of the
health care system (Hayslip 8 Leon, 1992) . Attenfion of the industry has
shifted from starfing programs to regulating them (Blum 8 Robbins, 1985,
cited in Hayslip 8 Leon, p. 34) . There are three disfinct but related terms
that will help one to understand the importance of regulafion: licensure ,
cerfification, and accreditafion. Licensure refers to "a legal process that
ensures at least a minimum standard of quality. The requirements are
established by a designated government agency, typically an aspect of the
state health department" (Hayslip 8 Leon, p . 34) . There are 15 states that
have specific Hospice licensure laws and the remaining states operate under
licensure categories covering hospitals, home health agencies, or nursing
homes (Tehan, 1985, cited in Hayslip 8 Leon). In 1978, Michigan
established specific Hospice licensure laws which were amended in 1984 (B .
Kowalski, Hospice staff, personal communicafion, March 31 , 1993) . All
public and most private insurance companies do require service providers
to be licensed in order to be eligible for reimbursement.

The second issue of regulafion, cerfificafion, is "a process that allows a
provider to be reimbursed for rendered services under the Medicare and
Medicaid health insurance programs" (Hayslip 8 Leon, 1992, p. 34) . To
become a certified Hospice and therefore to qualify for reimbursement
under Medicare, the Hospice program must meet requirements established
by the Health Care Financing Administration (HCFA) and the state level
agency that oversees Medicare and Medicaid programs (Hayslip 8 Leon,

1992 ) .

132

 

_ “eff—“ZiL

 

133
The third issue of regulation, accreditafion is "a voluntary process

established by the industry as a whole. . .it involves the comparison of
service providers against established standards. . .the standards are
established by professionals within the industry" (Hayslip 8 Leon, p. 35) .
As the Hospice movement grew from a philosophy of care to an ongoing part
of the health care system, The Nafional Hospice Organization (NHO) ,
established in 1977, sought public recognition and public and private
funding for hospice services . Issues of quality of care also arose across
insurance providers, and the NHO was instrumental in developing guiding
principles underlying Hospice care. The Medicare Hospice benefit became
law in August of 1982 and in 1986 legislafion made the benefit permanent.
Bereavement services were not included as part of this Medicare benefit for
reimbursement, yet provision of such services was sfill required if a
Hospice wanted to become licensed. This is sfill the case presently (M.
Gorman , Hospice Execufive Director, personal communicafion, March 4 ,

1993) .

 

_.A M—A LA ‘6—
a
L

.- x
J"

APPENDIX B

Series of Three Letters Sent to Participants
Letter One (on Hospice Letterhead)

Date

Dear (Person's Name):

Hello. I am a graduate student in the Department of Family and Child
Ecology at Michigan State University . I was formerly the Bereavement
Coordinator at Hospice of Muskegon County. The Execufive Director, Mary
Anne Gorman, has given me permission to conduct research through this
agency. I have an interest in understanding what helps grieving people. I
have this interest, in part, because I know what grief is like . My father
died of cancer in 1986. From my own experience I have some ideas about
what helps . I would like to see what others have found .

I am wrifing to you to invite you to be a parficipant in a study that I am
doing as part of the academic requirements for complefion of my doctoral
degree . I will be conducfing interviews with young adults who meet the
following criteria: (1) are between the ages of 25 and 40 years old, (2)
have had a parent die of cancer or a long term illness, either one year or
two years ago . I am especially interested in learning about those things
that have or have not helped you in your healing process .

Since it appears that you meet the criterion , would you be willing to help
me gain informafion about the grieving process? Those who have
experienced grief can provide the most useful informafion about grief
support. My goal is to help organizafions like Hospice in the development
of their grief support services . I want to know what helped you and what
did not .

I will be calling you in about 2 weeks to see if you would like to know more
about the study. At that fime, I will give you details, and answer any
quesfions you might have . Of course, I completely understand if
parficipafion in the study is something you just feel you cannot do at this
fime. I will be in touch.

(confinued on next page)

134

 

 

135

Thank you so much for taking the time to consider this. I look forward to
talking with you soon.

Sincerely ,

Kelly Rhoades, M.A.
Doctoral Candidate
Michigan State University

Letter Two (on Hospice Letterhead)

Date

Dear (Person's Name):

Hello again! I really enjoyed talking with you on the phone today. I am so
glad you would like to help me with this study! I do hope what I have told
you so far, over the phone , has given you an accurate idea about what to
expect. Remember, to complete the enclosed consent form. You may give
it to me at the start of our interview on

 

Thanks again for your willingness to be a part of this study. Ulfimately,
your parficipafion will help us learn more about the grieving process and
grief support. I look forward to meefing you in person.

Sincerely ,

Kelly Rhoades
Doctoral Candidate
Michigan State University

 

136
Letter Three (On Hospice Letterhead)

Date

Dear (Person's Name) :

I would like to thank you for your willingness to be a part of my research
study about grief support. I enjoyed the fime we spent together and I
learned so much from you. I feel privileged to have had the opportunity to
meet, and I will send you summary results of this study if you are
interested. Just check the box below indicafing your preference.

I know it isn't always easy to share with others the pain of grief , especially
with those you don't know very well. But I was touched by your openness
and honesty, and I want to reassure you that nothing you shared will be
identifiable in a way specifically attributable to you . Your contribution to
this study has already helped in the development of adequate grief
supports. I hope you found it worthwhile .

Remember, if you have any quesfions or concerns in this fime following our
interview, you may call Connie at Hospice of Muskegon (728-3442) , and
your message will be forwarded to me.

Sincerely ,

Kelly Rhoades
Doctoral Candidate
Michigan State University

 

 

YES NO __ Please send me results of this study.
My name and address are listed below.

Name

 

Address

 

 

APPENDIX C

Research Consent Forms

For Bereaved:

1.

I have freely consented to take part in a study being conducted by
Kelly Rhoades, a doctoral student at Michigan State University.
Under the supervision of: Linda Nelson

Academic Title: Professor, Family and Child Ecology

This research involves me being interviewed and asked questions
about my grieving process following the loss of my parent, and
issues concerning grief support.

Participafion in this study usually takes approximately 90 minutes
to 3 hours .

The study has been explained to me and I understand the explanafion
that has been given and what my parficipation will involve.

I understand that I am free to refuse to participate and to
disconfinue participafion in this study at any fime, and to choose
NOT to answer any of the quesfions .

I understand that all details about my parficipafion in the study
are confidenfial .

I have given my permission to have this interview audio-taped with
the understanding that my confidenfiality will be maintained and
that the interview will be erased as soon as it is transcribed. The
interviewer will keep the tape in a locked automobile trunk while
transporfing it to the place where it will be transcribed.
Transcripfions will be idenfified by code or by pseudonyms which I
selected.

I understand that in any report of the research findings,
informafion from all interviews will be included together, and that
I will remain anonymous. Results of the study will be made
available to me at my request .

(confinued on next page)

137

 

 

138

7. I have been given the name and the phone number of a contact person,
in case I have any questions or concerns after parficipating in
the study.

Signed:

 

Dated:

 

 

Ell-JEL

 

139

For Professionals:

1.

I have freely consented to take part in a study being conducted by
Kelly Rhoades , a doctoral student at Michigan State University .
Under the supervision of: Linda Nelson

Academic Title: Professor, Family and Child Ecology

This research involves me being interviewed and asked quesfions
about grief services provided for bereaved individuals and families
in my community .

 

Parficipafion in this study usually takes approximately 1 to 2 _ J
hours . 11'

The study has been explained to me and I understand the explanafion i
that has been given and what my parficipafion will involve . '

I understand that I am free to refuse to parficipate and to
disconfinue parficipafion in this study at any time , and to choose
NOT to answer any of the quesfions .

I understand that all details about my parficipafion in the study
are confidenfial.

I have given my permission to have this interview audio-taped with
the understanding that my confidenfiality will be maintained and
that the interview will be erased as soon as it is transcribed. The
interviewer will keep the tape in a locked automobile trunk while
transporfing it to the place where it will be transcribed.
Transcripfions will be idenfified by code or by pseudonyms which I
selected .

I understand that in any report of the research findings,
informafion from all interviews will be included together, and that

I will remain anonymous, unless otherwise indicated by me. This
agency/organization will be referred to only in a generic sense, and
not idenfifiable by name, unless permission is granted by me to use
the agency/organization name. Otherwise findings will be reported
anonymously (e. g . , "According to one Hospice Bereavement
Coordinator. . . , " or "a hospital oncology Social Worker stated that

. . . ") . Results of the study will be made available to me at my
request.

 

(confinued on next page)

140
7. I have been given the name and the phone number of a contact person,

in case I have any quesfions or concerns after parficipafing in
the study.

Signed:

 

Dated:

 

 

APPENDIX D

Data Collecfion Aids
YOUR LIFE LINE

On the life line below, place significant events in your life in sequence as
you recall them, or by your age.

(birth)

Omdotmwat-J

141

142
N otetaking Form

DATE BEGIN TIME END TIME PAGE—
PARTICIPANT NO. FGS NO FGS 13 Mo. 24 Mo.

FACTS INTERPRETATION

 

 

APPENDIX E

Interview Guides
For Bereaved:

PARTICIPANT NUMBER: SETTING CHOSEN:

 

13 month 24 month male female FGS NoFGS

(make observations to be recorded immediately following interview , on
facts/interpretafion form or in journal).

Reassure about confidenfiality .

1 . Complete background informafion sheet.

 

2. Draw your own life line indicafing turning points or significant events.
Okay to draw pictures. Paper, color pens and markers will be provided for
participants. This fime will serve as a period for rapport building with
parficipant.

3 . What was the geographic location of your parent at the fime of death?
What was your geographic locafion at the fime of death?

4. Did you serve as a "caregiver" to your parent when they were ill?

5. I would like to understand as fully as I can, the experience of grief you
had following the death of your parent . Can you describe to me what that
was like? You may begin at the fime of diagnosis of the illness, or following
the death.

6. What did you find helpful in your grieving process?

7. Did you find that some things were NOT helpful in your grieving
process? If yes , what were these things?

(trying to understand FORMAL and INFORMAL supports - if parficipant
should identify a formal support as the most helpful aspect of grief
support, then I will probe further, for example by asking if any other
supports were helpful to them?) .

8. Do you consider yourself to be grieving right now?

9. (Transformafive quesfion): Which things will never be the same?

Do you feel like you have grown or gained in any way, because of this loss?
If so , can you talk about this growth? How specifically have you grown?

10. Is this your first or second parent to die?

143

144

11 . What was your relafionship like with your (deceased parent)
mother/father?

as a child?
previous to his/her death?

any changes toward the end of life? (degree/ quality of interacfion)
describe your (deceased) mother's/father's overall personality?

12 . What were the circumstances of the death -- e. g. , when did you first
learn of the cancer, and how was your mother/father cared for during the
illness?

13. Describe your social supports.

14. Did you attend any grief support groups? a class or a group or both?
attend personal counseling or therapy to help you cope with this loss?

If yes, what did you find useful about this experience?

If not, did you consider attending any grief support groups?

Did you find anything not so useful? If yes -- can you describe those
things?

15 . How would you describe yourself today? How are you doing? What has
changed since the loss of your parent?

16. Have there been major changes in your marital and family life since
your mother's/father's death?

17. (If attended GS) do you have any siblings that did not attend a grief
support group or class? If YES, do you think he or she would be willing to
grant an interview with me? May I have his/her name and phone number?

18. Any related stressors? (e.g, any physical problems? financial
problems?)

19. Do you keep a journal? (if yes -- I will explore this)
20 . How would you rate your grief adjustment?

21. If you had to list ONE aspect -- the thing that helped you the most in
your grieving process -- what would this be?

22. Is there anything you would like to add?
23 . What has it been like today?

Thank you.

 

145

For Professionals:

 

 

 

PARTICIPANT NUMBER: SETTING CHOSEN:
Male Female Racial/ethnic group
Educational level Time worked on current job

 

 

Locafion of interview

Posifion / Title

 

What part of the populafion does your organizafion/agency serve?

Describe your job dufies.

What credentials are required to obtain this posifion?

Describe, overall, this organizafion and how it operates .

BEREAVEMENT SUPPORT:

What do you think helps people in their grief?

How have these services grown over the last five years?

What do you see as the needs within bereavement (if any) ?

What is your percepfion about the future of bereavement services in this
agency/organizafion?

What do you envision?

Do you think your agency/organizafion provides adequate service to meet
the needs of the bereaved in your community?

yes no for the most part

146
Can you tell me, specifically, about some of these services? For example,
how they got started, how they have sustained -- do you see these services

as helpful or not helpful? as meefing the needs of the bereaved individuals
and families?

Which of these services do you view as most helpful? Are there any you
see as not very helpful? Why?

In what ways can service/ support be improved?

Does this agency network/ communicate with other agencies that provide
bereavement services?

Anything else you would like to share about bereavement services?

If you had unlimited resources, and you could choose ONE area that you
would like to develop within bereavement and grief support services , what
would it be?

Have you lost a parent? If so, when? What was the cause of death? Did
you ufilize bereavement services? What kind?

Thank you .

APPENDIX F

Hospice Bereavement Support Quesfionnaire

 

 

 

 

PATIENT NAME: BEREAVED NAME:
ADDRESS: PHONE :
1 . In general, were our letters and articles helpful to you following the

death of your family member? Check One:
Very helpful Somewhat helpful Not very helpful

Please explain:

 

 

 

Did the mailings help you cope with your loss? Check one:

A great deal Somewhat helpful Very little

 

Were any mailings especially helpful? Explain:
Were any mailings especially non-helpful? Explain:
Please rate the usefulness of the following Hospice services . Circle
your response.

=Outstanding 4=Very helpful 3=Average 2=Somewhat helpful 1=Poor
a) Monthly letters 5 4 3 2 1 Check one: _ Rec'd. __ Did not

b) Monthly articles 5 4 3 2 1 " " n n n

c) Bereavement Booklet 5 4 3 2 1 " " " n u
"The Days Ahead"

d) Grief Recovery 5 4 3 2 1 " " _ Att'd u u
Course

e) Memorial Service 5 4 3 2 1 " " " n n

f) Inifial visit by 5 4 3 2 1 " " _ Rec'd. __ " "
staff member
9) Contacts by he- 5 4 3 2 1 " " _ " __ n "

reavement volunteer

147

148
6. Do you wish to receive any addifional services? __ Yes __ No
7. Would you like a phone call or visit? _ Yes _ No
Thank you for helping us in this way. Please return this form in the

enclosed envelope to: Bereavement Coordinator, Hospice -----
(name and address of Hospice provided here).

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