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The Lived Experience of Women Who Quit Assisted Reproductive Technology Without the Birth of a Live Child and Remained Childless

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The Lived Experience of Women Who Quit Assisted Reproductive Technology Without the Birth of a Live Child and Remained Childless THE LIVED EXPERIENCE OF WOMEN WHO QUIT ASSISTED REPRODUCTIVE TECHNOLOGY WITHOUT THE BIRTH OF A LIVE CHILD AND REMAINED CHILDLESS A dissertation Presented to the faculty of the School of Nursing Adelphi University In Partial Fulfillment Of the Requirements for the Degree Doctor of Philosophy by Linda Millenbach May 2001 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Abstract The purpose of this study was to describe the experience of women who quit assisted reproductive technology (ART) without the birth of a live child and remained childless. The review of the literature revealed that infertility has increased and is projected to increase in the future. Infertility has become a medical condition with ART as its cure. ART has made infertility a matter of choice. The decision to stop ART was reported to be not a failure of the reproductive physiology but a failure of personal will A cultural expectation for women to be mothers and a cultural stigma for women who are childless exist. Social and medical pressure is reported to be present to continue ART. There have not been any studies that examined how women quit ART and remained childless in a culture that does not value quitting, values motherhood, stigmatizes women who were childless, and deems technology as the cure for infertility. The research question of this study was “What is the lived experience of women who quit assisted reproductive technology without the birth of a live child and remained childless?” A descriptive phenomenological methodology was chosen to describe this experience. The sample consisted of 12 Caucasian, middle-class working women who lived in the eastern region of the United States and stopped ART between 1990 and 2000. These women were purposefully sampled. Interviews were audiotaped and transcribed by the researcher. Collaizzi’s (1978) method of phenomenological analysis was used and nine themes emerged from that data. The themes for women who stopped ART without the birth of a live child and remained childless were that they; (I) had rational reasons for stopping ART, (2) had caring expectations of health care workers, (3) developed various methods of control over ART, (4) created a new life without their own biological Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. or adopted child, (5) valued and desired the support of other women who had experienced ART, (6) had to deal with feelings of social isolation and being an outsider, (7) grieved and may not have resolved their grief (8) had their marriage/relationship impacted by quitting ART, and (9) ruled out adoption if either spouse was uncomfortable with it. This study had nine findings that had not been reported in the literature. These findings were women: (1) made the rational choice to stop ART based on rational reasons, (2) believed that worse things could have happened to them besides infertility, (3) had caring expectations of health care workers, (4) had their expectations met if they were “insiders,” (5) could have had their expectations of health care workers met if the health care worker practiced Peplau’s (1952) theory of nursing, (6) perceived their inability to create a legacy as a biological failure, (7) did not perceive themselves as a failure because they could not have a child, (8) found the use of online chat rooms to contact other women who did ART valuable, and (9) had to deal with the assumption that they would do whatever was necessary to have a child including having a child without their husband. The women in this study were very much in control of the decision to quit ART. They did not see themselves as quitters but as women who made a rational choice to stop ART based on rational reasons. They made the decision to stop infertility treatment with or without the support of their health care workers, who frequently wanted them to continue treatment. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Dedication This study is dedicated to the women who were willing to tell their stories about the experience of quitting assisted reproductive technology without the birth of a live child and remaining childless. It is hoped that this study based on their stories will help to educate the public, healthcare workers, and other women who are experiencing assisted reproductive technology. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. i v TABLE OF CONTENTS Abstract.......................................................................................................... i Dedication ...................................................................................................... iii Table of Contents ........................................................................................... iv CHAPTER 1.............................................................................................................. 1 Introduction. .............................................................................................................. 1 Phenomenon of Interest ................................................................................. 2 Significance of the Study ............................................................................... 3 Purpose of the Study ...................................................................................... 6 Problem Statement ......................................................................................... 9 CHAPTER 2.............................................................................................................. 10 Literature Review ...................................................................................................... 10 Technology and Infertility .............................................................................. 10 Scope of Infertility ................................................................. 10 Technology............................................................................. 13 Technology in Human Reproduction. .................................... 15 Impact of Infertility Technology. ........................................... 16 History of ART...................................................................... 18 Cost o f Technology................................................................ 21 Feminism and Reproductive Technology. .............................. 24 Choice........................................................................ 24 Freedom. .................................................................... 26 Consent ...................................................................... 27 Information. ................................................................ 28 Living with Infertility. .................................................................................... 29 Couples Living with Infertility ................................................ 29 Women Living with Infertility. ............................................... 36 Infertile Couples Living with Treatment ................................. 42 Pregnancy After Infertility. ..................................................... 49 Impact o f Ending Infertility Treatment ................................................ 54 Ending Infertility Treatment .................................................... 55 Decision-making/coping.......................................................... 60 Motherhood .............................................................................. 63 Childlessness ............................................................................ 68 R egret..................................................................................... 72 Failure ...................................................................................... 74 Goals/Roles/Expectations ........................................................ 79 Quitting .................................................................................... 81 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. V Nursing and Technology ................................................................... 83 Impact of Technology on Nursing ......................................... 84 Role of the Nurse in ART ..................................................... 86 Significance of the Study. .................................................................. 90 CHAPTER3............................................................................................................ 95 Study Design and Methodology ................................................................... 95 Purpose of the Study ......................................................................... 95 Research Question. ........................................................................... 95 Definition o f Terms .......................................................................... 95 Assumptions ..................................................................................... 95 Delimitations .................................................................................... 96 Type of Research Methodology........................................................ 97 Setting............................................................................................. 98 Protection of Subjects .....................................................................
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