ABSTRACT

This caring inquiry grounded in hermeneutic-phenomenologic philosophical perspectives was conducted to uncover the family experience of living with childhood chronic illness. The purpose of this study was to describe and interpret the family's experience and to sensitize health care professionals about this experience.

The presence of a child with chronic illness in a family is a unique, yet not uncommon experience. Chronic illness is both a personal misfortune and a sign of progress. No longer illnesses to die of, but still not thoroughly curable, these illnesses become illnesses to live with.

Data were generated from audiotaped interviews, photographs taken by the families, the art work of the children, and the researcher's journaling. Eight family and thirty two individual interviews were the source of text for analysis. Data analysis was guided by a caring inquiry combining the hermeneutic-phenomenologic approaches of van Manen and Ray and select philosophers. The analysis included several levels of reflection. The first level of reflection revealed the descriptions and themes of the families. The families' metaphor of Traveling a Different Road also emerged. In the second level of reflection literature and poetry were used to illuminate the experiences of these families and the themes were linguistically transformed into he seven metathemes of the experience: Embodiment of Illness: Being In Tune, Temporal Changes: Living With Uncertainty, Relationships: Creating a Caring Community, Interacting With our Environment: Being Aware, Endowing the Illness With Meaning: Understanding the Illness, Confronting Death, Affirming Life: Living With Dying, and A Spiritual Transcendence: Faith, Hope, and Love. Through deeper reflection, the unity of meaning, A Way of Life: A New Beginning Each Day, was revealed as metaphor. A theory of coming to understand the meaning of chronic illness as, A Way of Life: A New Beginning Each Day, integrates the themes, metathemes, and family metaphor.

This research makes a strong plea for transforming health care delivery for children with chronic illnesses from a medically based, categorical, illness structure to an experiential, holistic, family centered process. ;Implications for health care professionals in practice, education, health care policy development, and research are described.

TABLE OF CONTENTS

CHAPTER

I. INTRODUCTION 1

The Illness Experience 2

The Family Experience of Childhood

Chronic Illness 5

Understanding the Lived Experience

of Illness 6

The Intrigue 7

Purpose 8

ResearchQuestion 9

Relevance of the Study 9

Summary 14

II. HISTORICAL EXPLORATION OF CHILDHOOD

CHRONIC ILLNESS 16

Conceptual/Theoretical Models of Childhood

Chronic Illness 17

Coping Stress/Crisis Models 18

Phase/Stage Models 30

Developmental Models 37

Family and Child Response to Childhood Chronic Illness 43

Ongoing Stress 68

Parenting Roles 69

Hospitalization of the Child With Chronic Illness 70

Family Research on Chronic Illness 74

Presuppositions 77

Summary 78

III. RESEARCHING THE LIVED EXPERIENCE 80

Phenomenology as Philosophy 84

Philosophic Position of Hermeneutics

Within Phenomenology 87

Hermeneutic-Phenomenologic Approaches in Relation to the Human Sciences 93

Hermeneutic-Photography as a Technique of Method 101

Hermeneutic-Phenomenology as a Human Science Method 102

Relevance of Phenomenologic-Hermeneutics to this Study 103

Hermeneutic-Phenomenology Research Method as a Caring Inquiry 104

Techniques Within the Method 107

Story 112

The Process of a Caring Inquiry 115

Intentionality of the Inner Being of the Researcher 117

The Process of Dialogic Experiencing.... 117

Setting/Context 118

Selection of Participants 119

Ethical Consideration 120

Permission to Conduct the Research 120

Engaging with the Participants 121

Explicating Assumptions and Pre-understandings and Bracketing Them for the Interview Process 122

C entering 123

Bracketed Interviewing 123

The Process of Phenomenologic-Hermeneutical Reflecting and Transforming 127

Descriptive Reflecting 129

Interpretive Reflecting 129

Interpretive Stories 130

Themes 130

Metathemes: Linguistic Abstractions 131

Phenomenological Intuiting 132

Dialogue with Written Text: Examining Similarities and Differences 133

The Movement of Phenomenological-Hermeneutical Theorizing to a Theory of Meaning 134

Credibility and Significance of the Phenomenologic-Hermeneutical Process.... 135

Summary 138

IV. FAMILY PORTRAITS 140

Patterns Within Family Life 141

The Taylor Family 143

Traveling a Different Road 157

V. THE DISCOVERY 163

Within the Seasons of Change 165

Viewing the Landscapes Within Family Life 166

Metatheme I: Embodiment of Illness: Being in Tune 168

First Reflection: Rhythms of Chronicity: Being in Tune 168

Being in Tune With Your Body 168

Developing an Awareness 169

Constant Vigilance 170

RecognizingUrgency 170

MaintainingBalance 171

Constant Companion 171

Pain and Suffering 171

Second Reflection: Embodiment of Illness: Being in Tune 174

Metatheme II: Temporal Changes: Living With Uncertainty 178

First Reflection: Living With Uncertainty 178

Experiencing Time Differently 178

Uncertainty Within Life 179

Fear of the Unknown 183

Roller Coaster of Emotions 183

Living in the Present 185

Taking One Day At a Time 185

Living Each Day As a Gift 187

Living Life to Its Fullest 187

Second Level Reflection: Temporal Changes: Living With Uncertainty 188

Metatheme III: Relationships: Creating a CaringCommunity 194

First Reflection: Changing Relationships 195

Becoming a Family With Chronic Illness 195

New Responsibilities 197

Changing Roles 198

Seeking Normalcy and Dignity 199

Being Different in a World Where We Struggle to be Normal 200

Teasing 200

Recognizing Our Individuality/Treating My Child With 6ignity 201

Interacting With The Health Care System.... 201

Feeling Cared For 202

Feeling Mistreated 203

Being Lied To 204

A Collision With Experts 204

Voice That Challenge 206

Control/Taking Control 207

Routine 207

Waiting 208

Friendship and Acquaintances 209

Silenced Voices 210

Loneliness and Isolation 211

Feeling Alone/Feeling Left Out 213

Being Shuffled Around 214

Being Shoved to the Side 215

The Closeness of Family 215

A Unique Relationship 216

Community Response 216

Second Reflection: Relationships:

Creating a Caring Community 219

Metatheme IV: Interacting With Our

Environment: Being Aware 227

First Reflection: Awareness of Our

Environment 227

Environment as a Threat 227

We Are More Aware Now 228

Limitations and Restrictions 229

Second Reflection: Interacting. With Our

Environment: Being Aware 230

Summary 231

VI. A SEARCH FOR MEANING 233

Metatheme V: Endowing the Illness With Meaning: Understanding the Illness 233

First Reflection: Understanding the Illness 234

Gaining Understanding and Knowledge 234

Letting Go 236

Using the Knowledge at Hand 236

Gaining Knowledge Through Experience 237

Seeking Knowledge From Others 237

Bring Meaning and Reality to the Illness... 238

Second Reflection: Endowing the Illness With Meaning: Understanding the Illness 239

Metatheme VI: Confronting Death, Affirming Life: Living With Dying 245

First Reflection: Completing the Circle: Living in Nearness to Death 245

Living in Nearness to Death 245

Death As a Reality 246

Death of Friends 247

Death Affects Your Relationships 247

Doing Your Grieving While They're

Still Alive 248

The Gift of Life 248

Emphasizing the Positives 249

Second Reflection: Confronting Death, Affirming Life: Living With Dying 249

Metatheme VII: A Spiritual Transcendence: Faith, Hope, and Love 251

First Reflection: The Spiritual Circle: Faith, Hope, and Love 252

The Gift of Hope 252

Going on Faith 253

Love 254

Second Reflection: A Spiritual Transcendence: Faith, Hope, and Love... 255

Summary 260

VII. A THEORY OF MEANING DISCUSSION AND IMPLICATIONS 261

Coming to Understand Chronic Illness As a Way of Life: A New Beginning Each Day... 261

My Journey in Coming to Understand 263

Embodiment of Illness: Being in Tune 267

Relationships: Creating a Caring Community. 272

Temporal Changes: Living With Uncertainty.. 273

Interacting with Our Environment: Being Aware 279

Endowing the Illness With Meaning: Understanding the Illness 280

Confronting Death, Affirming Life: Living With Dying 283

A Spiritual Transcendence: Faith, Hope, and Love 284

A Way of Life: A New Beginning Each Day... 286

Discussion 290

Implications for Practice, Education, Health Policy Reform, and Research 299

Nursing Practice 302

Education 304

Nursing Education 304

Health Care Policy Development and Reform.. 306

Financial Burdens 306

Research 308

Personal Reflections 310

REFERENCES 312

APPENDICES 333

A. Letter to the Participants 333

B. Demographic Sheet 335

C. Demographics 337

D. Approval to Conduct Research 339

E. Consent Forms 341

F. Family Stories 347

Barnes Family 348

Grey Family 359

Harvey Family 369

Jones Family 379

Madison Family 389

Miller Family 396

Scott Family 406

G. Permission to Publish Road Not Taken.. 417

H. Permission to Publish Bleeder 419

I. Permission to Publish Uncertainty 42

© Max van Manen, 2002
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