The Lived Experience of Parental Bereavement

293 Pages·2017·1.73 MB·English

Seton Hall University
eRepository @ Seton Hall
Seton Hall University Dissertations and Teses
Seton Hall University Dissertations and Teses
(ETDs)
Spring 5-19-2014
Te Lived Experience of Parental Bereavement
Christine Denhup
The Lived Experience of Parental Bereavement
by
Christine Yvonne Denhup

Submitted in partial fulfillment of the requirements for the degree
Doctor of Philosophy
College of Nursing
Seton Hall University
May 2014
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Copyright © Christine Denhup 2014
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ACKNOWLEDGEMENTS

I extend heartfelt appreciation to my Dissertation Chair, Dr. Judith Lothian,
Ph.D., R.N., and Committee for their support, encouragement, and expert guidance
throughout this research process. Upholding a standard of excellence, they dedicated
countless hours, offered valued input, and engaged in helpful discussions which served
to enrich this dissertation. For all of their contributions, I am very grateful.
I wish to thank Sigma Theta Tau International Honor Society of Nursing,
Gamma Nu Chapter for their foresight in recognizing the importance of this
dissertation in its very early stages. Gamma Nu bestowed upon me the 2011 Gamma
Nu Research Grant in recognition of the quality of my dissertation proposal. This
award helped to fund a portion of incurred expenses of this dissertation. For this, I am
both grateful and honored.
I am very thankful for the many support group informants for the multitude of
ways in which they facilitated this study to come to fruition. I extend my deepest
gratitude to each of the parents who partnered with me to complete this study.
Through their stories, nursing gains a deeper understanding of the meaning of the
lived experience of parental bereavement which, in turn, will improve care for parents
who experience the death of a child in the future.
Most especially, I am thankful for the loving support and encouragement of my
family. My family has sustained me throughout my doctoral education journey. I
could not have completed this journey without them.
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DEDICATION
I dedicate this work to my Mom, Elaine Denhup, forever my guiding light who
believed in the value of education, the importance of helping others, and the love of
family.
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TABLE OF CONTENTS

ABSTRACT..................................................................................................8

I. INTRODUCTION........................................................................................9
Phenomenon of Interest..........................................................................9
Relevance for Nursing..........................................................................10
Problem and Justification......................................................................10
Aim of the Study...................................................................................12
Research Question and Design.............................................................12
Researcher’s Perspective.......................................................................13

II. REVIEW OF LITERATURE.....................................................................16
Evolution of Bereavement Theories.....................................................16
Related Concepts..................................................................................17

III. METHODOLOGY......................................................................................23
Phenomenology.....................................................................................23
Protection of Human Subjects...............................................................30
Participants............................................................................................31
Setting...................................................................................................32
Gaining Access and Establishing Rapport............................................33
Data Collection and Analysis................................................................35
Establishing and Maintaining Rigor.....................................................37

IV. PARENTS AND THEIR CHILDREN.......................................................43
Joan, Joshua’s Mother...........................................................................43
Sara, Adam’s Mother............................................................................45
Kelly, Sam’s Mother.............................................................................47
Doris, Cindy’s Mother..........................................................................49
Peter, Robert’s Father..........................................................................56
Emma, Dorothy’s Mother.....................................................................59

V. NEW STATE OF BEING...........................................................................64
Life is Completely Different.................................................................64
Aftermath of a Tsunami in the Soul......................................................66
Invisibility.............................................................................................67
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VI. PROFOUND SUFFERING........................................................................70
Suffering: Incomparable, Indescribable, and Undeserved...................70
Grief......................................................................................................75
Things People Do or Say Cause Additional Suffering.......................108
Health Care Provider Behaviors and Care Processes Cause Additional
Suffering..............................................................................................120

VII. PARENTING RELATIONSHIP CONTINUES IN THE PRESENCE OF
THE CHILD’S ABSENCE.......................................................................144
Presence of the Child’s Absence.........................................................144
Parenting Relationship Continues.......................................................150

VIII. SELF-RENAISSANCE............................................................................166
Self-Identity........................................................................................166
Self-Traits Change..............................................................................171
True versus Pretend Self.....................................................................174
Dreams of a Future Never to Be.........................................................178

IX. JOURNEY TOWARDS HEALING SUSTAINED BY SUPPORT AND
HOPE........................................................................................................182
Healing: Learning How to Live with Loss..........................................182
Self-Care.............................................................................................187
Support................................................................................................192
Things People Do or Say Minimize Additional Suffering..................212
Health Care Provider Behaviors and Care Processes Minimize
Additional Suffering...........................................................................219
Meaning..............................................................................................228
Faith....................................................................................................232
Why?...................................................................................................240
Hope....................................................................................................242

X. SUMMARY, STRENGTHS AND LIMITATIONS, IMPLICATIONS..245
Summary.............................................................................................245
Strengths and Limitations...................................................................246
Implications for Research, Education, and Practice...........................253
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XI. REFERENCES..........................................................................................269

XII. Appendices................................................................................................283
A. Informed Consent Form......................................................................283
B. Flyer....................................................................................................288
C. Say Their Names.................................................................................289
D. Precious Child.....................................................................................291
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ABSTRACT
The purpose of this manuscript is to present a Heideggerian hermeneutic
phenomenological nursing research study on the phenomenon of parental
bereavement. The aim of this study is to describe the lived experience of bereaved
mothers and fathers who have experienced the death of a child due to cancer. Van
Manen’s (1997) method guided this qualitative inquiry. New knowledge describing
the meaning of the lived experience of parental bereavement promotes a better
understanding of the phenomenon from the perspective of parents, fills a significant
gap in the literature, and informs nursing research, education, and practice.

Keywords: parental bereavement, child death, hermeneutic phenomenology,
Van Manen’s methodology
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Chapter I
INTRODUCTION
THE LIVED EXPERIENCE OF PARENTAL BEREAVEMENT
Phenomenon of Interest
The death of a child is life’s most difficult, intense, and traumatic experience
regardless of the cause (Foster, Lafond, Reggio, & Hinds, 2010; Himelstein, Hilden,
Boldt, & Weissman, 2004; James & Johnson, 1997; Rando, 1985; Sanders, 1980;
Wilson, 1988). The Centers for Disease Control and Prevention (CDC) reports that
45, 068 children and adolescents, 19 years of age or less, died in the United States
during 2010 (Murphy, Xu, & Kochanek, 2013) leaving tens of thousands of parents to
experience bereavement.
Bereavement, as defined in the Institute of Medicine report, When children die:
Improving palliative and end-of –life care for children and their families, is “a broad
term that encompasses the entire experience of family members and friends in the
anticipation, death, and subsequent adjustment to living following the death of a loved
one” (Christ, Bonanno, Malkinson, & Rubin, 2003, p. 554). Bereavement is
considered to be a complex, dynamic, nonlinear process (Christ et al., 2003) that
includes “internal adaptation of individual family members, their mourning processes,
expressions, and experiences of grief; and changes in external living arrangements,