Understanding Women's Recovery from Illness and Trauma
Publication Year: 1999
The author of this volume draws on real life experiences to present a practical guide to the `why' and `how' of human responses to illness. Margaret Kearney provides practical help to counsellors who may not have been exposed to many aspects of women's experiences of illness; draws extensively from the research literature and her own nursing experience to identify the common ground of women who have moved through the difficulties of illness to satisfactory outcomes.
- Front Matter
- Back Matter
- Subject Index
- Chapter 1: Why Listen to Women: The Social and Political Context of Women's Health and Illness
- Chapter 2: Reckoning and Reconciling: A Map of Women's Illness and Recovery
- Chapter 3: Cancer and Heart Disease: Responding to a Tragic Diagnosis
- Chapter 4: Learning to Live with it: Integrating Self and Chronic Illness
- Chapter 5: Pain, Immobility, and Stigma: Illness Burdens
- Chapter 6: Family Violence: Recovering from Trauma past and Present
- Chapter 7: Eating Disorders and Addiction: Changing Deeply Rooted Patterns
- Chapter 8: Supporting Women toward Health: Future Directions
Women's Mental Health & Development[Page ii]
Series Editor: Barbara F. Okun, Northeastern University
Women's Mental Health and Development covers therapeutic issues of current relevance to women. This book series offers up-to-date, practical, culture-sensitive, professional resources for counselors, social workers, psychologists, nurse practitioners, family therapists, and others in the helping professions. Volumes in this series are also of significant value to scholars in gender studies and women's studies.
This series is designed to deal particularly with those issues and populations underrepresented in the current professional literature. Particular attention is paid to the socio-cultural contexts of these issues and populations. While some of the volumes of this series cover topics pertinent to all women, others focus on topics applicable to specific groups. The series integrates material from established models, emerging theoretical constructs, and solid empirical findings in a format designed to be applicable for clinical practice. Professionals and trainees in a variety of mental health fields will find these readable, user-friendly volumes immediately useful.
Authors of volumes in this series are selected on the basis of their scholarship and clinical expertise. The editorial board is composed of leading clinicians and scholars from psychology, counseling, and social work.
Paula Allen-Meares, University of Michigan
Laura S. Brown, Private Practice, Seattle, Washington
Christine Courtois, Psychiatric Institute of Washington, DC
Ingrid Grieger, Iona College
Allen Ivey, University of Massachusetts
Aurora Jackson, Columbia University
Helene Jackson, Columbia University
Mark Kiselica, Trenton State College
Mary Sue Richardson, New York University
Derald Wing Sue, California School of Professional Psychology, Alameda, and California State University at Hayward
Copyright © 1999 by Sage Publications, Inc.
All rights reserved. No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher.
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Library of Congress Cataloging-in-Publication Data
Kearney, Margaret H.
Understanding women's recovery from illness and trauma / by Margaret H. Kearney
p. cm.—(Women's mental health and development; v. 4)
ISBN 0-7619-0558-8 (cloth)
ISBN 0-7619-0559-6 (paperback)
1. Women—Health and hygiene. 2. Women—Diseases—Social aspects. 3. Women—Diseases—Psychological aspects. 4. Social medicine. 5. Psychic trauma. 6. Catastrophic illness—Psychological aspects.
I. Title. II. Series.
RA564.85 .K425 1999
This book is printed on acid-free paper.
99 00 01 02 03 04 05 7 6 5 4 3 2 1
Acquiring Editor: Jim Nageotte
Editorial Assistant: Heidi Van Middlesworth
Production Editor: Wendy Westgate
Production Assistant: Nevair Kabakian
Cover Designer: Ravi Balasuriya
Series Editor's Introduction[Page vi]
One of the outcomes of the women's movement is the increasing attention to women's experiences of and responses to health issues across the life span. Just as women's development differs from that of men, the types of illnesses, treatments, and the overall impact on women's sense of self, relationships, family, and work also differ. Although research in the areas of women's health is burgeoning, there are still many health care providers who are not attuned to gender differences in the nature and types of illness experiences. Clinicians can learn about how women restructure their identity, relationships, and life patterns in response to health-related events from a comprehensive overview of the research to-date and from women's personal stories.
In Volume 4 of the Sage Women's Mental Health and Development series, Margaret H. Kearney synthesizes existing theories about women's experiences of health crises, recovery, and growth from different disciplines with personal stories of women into a cohesive phase model that allows us to provide meaningful support, understanding, and care for women undergoing health transformations. Working with Dr. Kearney on this volume has positively affected my clinical work: Teaching her transformation model to clients and their families has provided a guiding framework for understanding the difficult and challenging process of transformation. This process involves letting go of pre-illness or trauma assumptions about who we are, what we can do, and how things are “supposed” to be so that we can develop a more flexible self paradigm that allows us to shift roles, responsibilities, and identities. Husbands, friends, parents, and children face the same challenges to their views of “the way things are supposed to be.”
Dr. Kearney presents her material in a way that allows us to view differences in the perspectives of the meaning of health, illness, and treatment through the lenses of culture, ethnicity, socioeconomic class, and spirituality, as well as consideration of the impact of one's unique personal history and environmental stressors. This aspect of women's development is critical to our understanding and treatment of women in all stages of life, given the reported prevalence of depression, eating disorders, cancer, heart disease, chronic illness, and strokes. The author brings her 25 years of women's health nurse practitioner experience in urban, rural, poor, and wealthy areas of the United States to this commendable task. Researchers, clinicians of all disciplines, and academicians interested in women's issues can all benefit from this thoughtful, clarifying volume.
The Editorial Board and I believe this book is an invaluable companion to the other volumes in the series. Forthcoming volumes will deal with women and cancer and women's psychopharmacology.Ph.D., Northeastern University,
[Page vii]For Emily and Paul
Through struggle and surrender, ill people paradoxically grow more resolute in self as they adapt to impairment… They believe in their inner strength as their bodies crumble. They transcend their bodies as they surrender control… With this stance comes a sense of resolution and an awareness of timing. They know when to struggle and when to flow into surrender. They grow impervious to social meanings, including being devalued. They can face the unknown without fear while remaining themselves. At this point, chronically ill people may find themselves in the ironic position of giving solace and comfort to the healthy.–, 1995, p. 675Listening to Women about Illness
Women in pain, whether physical, emotional, or spiritual, make up much of the clientele in counseling caseloads. Counselors spend many hours eliciting and listening to women's stories of how their lives and views of themselves have changed as they have suffered losses, setbacks, and surprises along life's path. Some life transitions or untoward events–such as divorce, bereavement, infertility, or parenting difficulties–are common enough that counselors have plentiful literature to draw from in helping these women and are able to recognize common responses and stages of recovery and healing.
The goal of this book is to provide similar support for counseling of women suffering illness or recovering from trauma. It offers real-life experiential information from women themselves. I also theorize about common threads of experience of women who have moved through these difficulties and reached a point of resolution. The theory presented in Chapter 2, which is rooted not in hypothetical “armchair” speculation but in a careful analysis of over 100 studies of many hundreds of women, is reiterated in the subsequent chapters focusing on particular situations of illness and trauma. Counselors may find this model useful for their work with women in health-related transitions. The women quoted in the book provide insights into how they found strength and resilience in integrating great loss and devastation into their lives.
This book is written by a nurse and draws predominantly from nursing research literature. It explores and synthesizes theoretical viewpoints on health arising from nurses' interest in patients' experiences and their research methods [Page ix]drawn from anthropology and medical sociology. It may be useful to researchers who are interested in a collection of small studies of health experiences.
Yet the main purpose here is to offer insights for clinicians. I bring to this project many years of experience as a women's health nurse practitioner; my clinical work has served as a testing ground for the ideas in this book. Nurse researchers have made important contributions to understanding the experiences of health and illness, which should be disseminated beyond our profession. Although nurses focus on prevention and treatment of physical and mental illness, like counselors, our broad focus is on supporting individuals toward their optimal level of wellness and growth within their unique life contexts. Therefore, the goal of this book is to offer a synthesis of ideas from nurses' and others' observations of women's illness experiences that will be useful to counselors and others working directly with women undergoing health changes.
Although nurse researchers and other scientists are conscientiously seeking to remedy this deficit, women marginalized by poverty, language and cultural difference, and illness itself have been inadequately studied and heard in past years and as a result are less visible in this book than I would like. Context is indeed critical to every woman's view of herself and her possibilities. What illness means, what recovery consists of, what a woman with a disability should be doing within a culture or society, how much a woman should attend to her own rather than her family's needs, the role of the environment and the spiritual world in disease all are defined differently within diverse age groups, families, social worlds, and cultural traditions. In my nursing practice with women of all income ranges and educational levels and in my nursing research with women who are substance users and survivors of domestic violence, I have gained sensitivity to the importance of ethnic, cultural, and socioeconomic differences in women's understandings of their lives and relationships.
Unfortunately, due to lack of available research, this book will not answer all the important questions about how diversity affects illness experience. Any effort like this one to generalize about experience must smooth over the bumps and irregularities of unique life stories and pass over the minute differences in personal histories and conditions of women's lives. One can only tell a few parts of a story at a time, which flattens out a three-dimensional life into a line or diagram. Although this book brings together many studies of many kinds of illness and trauma experiences, we can only speculate about other unstudied situations. Many questions will remain.
One question this book will not answer is whether women's illness experience resembles men's experience. Certainly, women's roles and relationships and how women are socialized from infancy to understand themselves and their place in the world create different experiences of illness and loss, but the focus here is on women's stories in themselves rather than on contrasts or comparisons. Another unanswered question is how women in the United States and Canada resemble women from other regions. With a very few [Page x]exceptions, this book is based on studies of North American English-speaking women.The Power of Stories Told Together
As will become obvious in the next chapter, there is a surprising dearth of large-scale research on women's health problems. With the exception of health problems affecting reproduction, neither the physical manifestations and consequences nor the psychological impact of women's illness has been studied in depth until very recently. The studies that exist are often limited to women of racial and ethnic majority status. Major new initiatives also are limited to a focus on menopause and related health problems. Therefore, we are unable to make broad-based statements about “what happens to women with multiple sclerosis” or “the psychological effects of arthritis for women.”
Nor would this meet the needs of counselors who see individual women, one at a time, and seek to understand their unique experiences. We respond to women as they seek to put illness into context and readjust their lives and goals around their changing health. This book aims to give therapists and other professionals a head start–an opportunity to hear from many women who have told their stories to researchers, who in turn have organized the stories into a cohesive set of findings.
This book is a synthesis of qualitative research: systematic study of human experience using text, visual observation, the spoken word, and other “live” sources as data, rather than converting personal experiences into numbers and using statistical analysis to come to conclusions. Qualitative researchers study “lived reality,” the subjective experience of being in a particular situation at a particular time (Munhall, 1995). This approach recognizes that the values and beliefs of both researcher and researched will affect the goals and outcomes of study and that the findings of such research are cocreated by scientist and participant. The product of a qualitative research study is a description of an experience, in theoretical terms or in the form of narrative or themes.
The epistemological tenet here is that personal stories have truth value that is different than that of large-sample survey research with high statistical power. I make no claim of generalizability of the experiences portrayed here, nor do the small studies from which these. women's voices are drawn rely on random sampling or large numbers. The rigor of this text-based (as opposed to numbers-based) science is found not in random sampling or statistical compensation for chance findings but in the researcher's adherence to a specific interpretive approach, a meticulous faithfulness to the participants' perspective during a systematic analysis of meanings. The value of small-scale, in-depth research is not in its applicability to large groups but in the relevance of the experiences portrayed herein to the reader's own professional needs. A woman's statement or [Page xi]a theoretical conclusion drawn from many statements is meaningful and valid if it has what Glaser and Strauss (1967) called “fit” with the reader's experience and “grab” in its recognizability, logical coherence, and believability.
Qualitative research can attempt to answer the “why” and “how” questions of human responses to illness. Listening to 6 women can yield more about their lived experience of suffering and processes of self-transformation than can reading an excellent statistical report on the effectiveness of a medical treatment or the frequency of depression or anxiety. Readers rather than computerized analyses judge the significance of this type of research, which is designed to gather vivid and meaningful examples of human experience on a particular topic.What is Grounded-Theory Research?
This book is built on studies that employed grounded theory, a form of qualitative research aimed at discovering theory about human perceptions and actions (Glaser & Strauss, 1967). The goal is not to simply describe the essence of an experience for a group of people but to make theoretical conclusions about how people respond to this situation and how the experience changes over time. This makes it well-suited to the process of illness and recovery. Theory discovered in this way is systematically developed from experiential information using a technique of constant comparison, drawing theoretical ideas from the original data and expanding and modifying these ideas by constant comparison of all data sources to each other.
Grounded theorists develop samples for research not by restricting themselves to a homogeneous group but by seeking to maximize the variation within a sample. Theoretical sampling involves seeking out new situations to observe and new participants to speak with who can help clarify the areas of the emerging theory that are still unclear. The researcher continues to collect data until no new information is being discovered. The usual result is a theoretical model of a social-psychological process shared by a variety of participants in a particular life situation and the conditions and contingencies that affect individuals' progress through the phases of the process (Strauss & Corbin, 1990). Using a theory of recovery from a particular illness or loss, clinicians can begin to predict the phases of recovery and the potential obstacles or resources, and help clients move toward positive outcomes.
Here, we will take the act of bringing together women's stories one step further by providing an overarching theoretical framework that can be used to place women's statements along a continuum of change. For this book, a higher-level grounded theory known as grounded formal theory (Strauss, 1987) was developed. It is presented in Chapter 2. This is the result of analysis of the many single grounded-theory studies presented in the later chapters to find a process that all the groups studied have in common. It was developed using the same [Page xii]steps of constant comparison and theoretical sampling that the original studies used, but the “participants” were not individual women but the hundred-plus individual articles, books, or dissertations. The resulting theory is of necessity very general, but its basic concepts are important to any woman struggling to come to terms with illness or trauma. With this simple model in mind, counselors can be alert to important issues and support women as they work through their unique and particular losses.
In bookstores and magazines can be found many stories of women's personal journeys through illness or misfortune. These books are mainly by or about women who were writers or public figures before they became ill. They have value in their own right, but they are not drawn on here because they are not produced by systematic research on ordinary people. Nonetheless, these single-person accounts echo all the components of the processes described here and can serve as in-depth examples. Among professional publications, there are also other book-length collections of studies of women's illness experiences (e.g., Munhall, 1994, 1995; Young-Mason, 1997).
This book does not aim to teach counselors new techniques or even new ways of applying old skills. Rather, it is designed to provide windows into aspects of women's experience that counselors may not encounter on a regular basis. Whenever feasible, direct quotations from women as cited by grounded theory researchers are used to demonstrate important components of illness experience. The result is a story that makes sense and that can be used to understand and support women who are living through it. This is a tale of reckoning with hard truths over time and finding ways to reconcile these losses with the ongoing priorities of women's lives. Reckoning and reconciling form a framework of illness recovery that produces not only accommodation to the daily demands of poor health but growth toward a new idea of self-actualization.
This book was made possible by more than 100 qualitative researchers in nursing, counseling, and the health sciences. Their publications and dissertations are the platform on which this work is built, and any misinterpretations are mine alone. Thanks also to Boston College for a Faculty Research Expense Grant that funded a summer of library work, and to my editors, Barbara Okun and Jim Nageotte, without whose support and excellent judgment this book would not be what it is. I am continually grateful to the women and men who told their stories of illness, pain, and healing to the researchers cited in this book, and to all those who continue patiently to instruct their health care providers about the experience of illness.
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About the Author[Page 187]
Margaret H. Kearney, RN (Ph.D., University of California at San Francisco), is a certified women's health nurse practitioner and an associate professor of nursing at Boston College, in Chestnut Hill, MA. She is interested in the self-care experiences of pregnant and parenting women and has conducted a number of qualitative studies with addicted and recovering women using the grounded theory approach. Her current research focuses on the impact of violence during pregnancy, on nursing support of socially high-risk pregnant women and mothers, and on qualitative approaches to meta-analysis.