Infertility counseling (libro)
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Many people experience increased feelings of depression, conflict, family tension, and anxiety during infertility. An experienced and supportive infertility counselor can help individuals and couples understand and cope with the stress and confusion of infertility. This counselor might be a licensed psychiatrist, psychologist, or social worker. The academic degree itself is not important in most cases; what is important is the counselor’s understanding of and approach to infertility issues and treatments. Some clients prefer a counselor who has personally experienced infertility, but a good counselor will be able to help a client regardless of his or her background.Compared with support groups, infertility counseling has many advantages. Some people enjoy the energy of group sessions, but others feel that group sessions are too dramatic, do not like the personalities of some members, or do not feel comfortable speaking candidly to a group. Inevitably, there will be pregnancy announcements, which can seem like “graduations” to those who are still trying to conceive. Also, some issues are too serious and pressing to be adequately addressed in a group setting, such as persistent depression, marriage problems, and conflict over the next step in treatment or ending treatment.
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- 3. INFERTILITY COUNSELING Infertility Counseling: A Comprehensive Handbook for Clinicians, Second Edi- tion, is a comprehensive, multidisciplinary textbook for all health profession- als providing care for individuals facing reproductive health issues. It is the most thorough and extensive book currently available for clinicians in the field of infertility counseling, providing an exhaustive and comprehensive review of topics. It addresses both the medical and psychological aspects of infertility, reviewing assessment approaches, treatment strategies, medical counseling issues, third-party reproduction, alternative family building, and postinfer- tility counseling issues. Each chapter follows the same format: introduction, historical overview, literature review, theoretical framework, identification of clinical issues, suggestions for therapeutic interventions, and future impli- cation. This edition also includes extensive appendixes of psychological and legal tools useful to all clinicians, including an Internet database of resources and an extensive glossary of terminology. Sharon N. Covington is an Assistant Clinical Professor in the Department of Obstetrics and Gynecology at the Georgetown University School of Medicine in Washington, DC. She is also currently the Director of Psychological Support Services at Shady Grove Fertility Reproductive Science Center in Rockville, Maryland. A clinical social worker and psychotherapist for more than thirty years, she practices individual, couple, and group psychotherapy as well as the highly specialized area of infertility counseling. Linda Hammer Burns is an Assistant Professor in the Department of Obstet- rics, Gynecology, and Women’s Health at the University of Minnesota Medical School and the Director of Counseling Services at the Reproductive Medicine Center in Minneapolis, Minnesota. She has been a psychologist for more than twenty years, providing individual and couple counseling in women’s health psychology, with a special focus on reproductive health psychology.
- 5. Infertility Counseling A COMPREHENSIVE HANDBOOK FOR CLINICIANS SECOND EDITION Edited by SHARON N. COVINGTON Assistant Clinical Professor Department of Obstetrics and Gynecology Georgetown University School of Medicine Washington, DC LINDA HAMMER BURNS Assistant Professor University of Minnesota Medical School Department of Obstetrics, Gynecology, and Women’s Health Minneapolis, MN
- 6. cambridge university press Cambridge, New York, Melbourne, Madrid, Cape Town, Singapore, São Paulo Cambridge University Press The Edinburgh Building, Cambridge cb2 2ru, UK Published in the United States of America by Cambridge University Press, New York www.cambridge.org Information on this title: www.cambridge.org/9780521853637 © Cambridge University Press 1999, 2006 This publication is in copyright. Subject to statutory exception and to the provision of relevant collective licensing agreements, no reproduction of any part may take place without the written permission of Cambridge University Press. First published in print format 2006 isbn-13 978-0-511-24939-6 eBook (EBL) isbn-10 0-511-24939-X eBook (EBL) isbn-13 978-0-521-85363-7 hardback isbn-10 0-521-85363-X hardback isbn-13 978-0-521-61949-3paperback isbn-10 0-521-61949-1 paperback Cambridge University Press has no responsibility for the persistence or accuracy of urls for external or third-party internet websites referred to in this publication, and does not guarantee that any content on such websites is, or will remain, accurate or appropriate.
- 7. For our husbands, Barry Truitt Covington and Sheldon Robert Burns, and our growing families, Brendan Truitt Covington, Laura Stratford Covington, Michelle Covington Harmon, Scott Newcomer Harmon; and Sean Covington Harmon; Evan Robert Burns, Alicen Burns Spaulding, and Stephen Alan Parlin Spaulding. You will always be the wind beneath our wings.
- 9. Contents List of Contributors page xi Foreword by Roger D. Kempers xv Preface xvii PART I. OVERVIEW 1 Psychology of Infertility 1 Linda Hammer Burns and Sharon N. Covington 2 Medical Aspects of Infertility for the Counselor 20 William R. Keye, Jr. 3 The Psychology of Gender-Specific Infertility Diagnoses 37 William D. Petok 4 Cross-Cultural Issues in Infertility Counseling 61 Michaela Hynie and Linda Hammer Burns PART II. ASSESSMENT 5 Psychosocial Evaluation of the Infertile Patient 83 Susan Caruso Klock 6 Psychopathology and Psychopharmacology in the Infertile Patient 97 Katherine E. Williams and Laurel N. Zappert 7 Evidenced-Based Approaches to Infertility Counseling 117 Jacky Boivin PART III. TREATMENT MODALITIES 8 Individual Counseling and Psychotherapy 129 Linda D. Applegarth 9 Counseling the Infertile Couple 143 Christopher R. Newton 10 Group Approaches to Infertility Counseling 156 Sharon N. Covington 11 Behavioral Medicine Approaches to Infertility Counseling 169 Christianne Verhaak and Linda Hammer Burns vii
- 10. viii CONTENTS 12 Complementary and Alternative Medicine in Infertility Counseling 196 Jacqueline N. Gutmann and Sharon N. Covington 13 Sexual Counseling and Infertility 212 Linda Hammer Burns PART IV. MEDICAL COUNSELING ISSUES 14 Patients with Medically Complicating Conditions 237 Donald B. Maier, Sharon N. Covington, and Louise U. Maier 15 Genetic Counseling and the Infertile Patient 258 Linda Hammer Burns, Krista Redlinger-Grosse, and Cheri Schoonveld 16 Pregnancy Loss 290 Sharon N. Covington PART V. THIRD-PARTY REPRODUCTION 17 Recipient Counseling for Donor Insemination 305 Petra Thorn 18 Recipient Counseling for Oocyte Donation 319 Patricia L. Sachs and Linda Hammer Burns 19 The Donor as Patient: Assessment and Support 339 Linda D. Applegarth and Sheryl A. Kingsberg 20 Embryo Donation: Counseling Donors and Recipients 356 Linda D. Applegarth 21 Surrogacy and Gestational Carrier Participants 370 Hilary Hanafin PART VI. ALTERNATIVE FAMILY BUILDING 22 Adoption after Infertility 387 Linda P. Salzer 23 Involuntary Childlessness 411 Gretchen Sewall and Linda Hammer Burns PART VII. POSTINFERTILITY COUNSELING ISSUES 24 Ending Treatment 429 Janet E. Takefman 25 Pregnancy after Infertility 440 Sharon N. Covington and Linda Hammer Burns 26 Parenting after Infertility 459 Linda Hammer Burns 27 Assisted Reproductive Technology and the Impact on Children 477 Dorothy A. Greenfeld and Susan Caruso Klock PART VIII. INFERTILITY COUNSELING IN PRACTICE 28 Infertility Counseling in Practice: A Collaborative Reproductive Healthcare Model 493 Sharon N. Covington 29 Ethical Aspects of Infertility Counseling 508 Nancy Stowe Kader and Dorothy A. Greenfeld 30 Legal Issues in Infertility Counseling 521 Margaret E. Swain
- 11. CONTENTS ix 31 Global Perspectives on Infertility Counseling 544 Jean M. Haase and Eric Blyth APPENDIXES 1 Qualification Guidelines for Mental Health Professionals in Reproductive Medicine 559 2 International Comparison of Standards/Guidelines for Infertility Counselors 561 3 Comprehensive Psychosocial History for Infertility (CPHI) 563 4 Psychological Fertility-Related Questionnaires 565 5 Recommended Guidelines for the Screening and Counseling of Oocyte Donors 569 6 Psychological Guidelines for Embryo Donation 572 7 Psychological Guidelines for Evaluation and Counseling of Gestational Carriers and Intended Parents 574 8 Release of Information Example 579 9 Informed Consent: Pre-Psychological Counseling and/or Evaluation Example 581 10 Informed Consent: Proceeding with Fertility Treatments: Post-MHP Consultation/Evaluation Example 583 11 Embryo Donor Consents: Consent of Couple to Donate Frozen Embryos Example 585 12 Embryo Recipients’ Consents: Consent to Receive Thawed Donated Embryos Example 588 Resources 593 Glossary 597 Author Index 615 Subject Index 635
- 13. List of Contributors Sharon N. Covington, MSW School of Psychology Assistant Clinical Professor Cardiff, Wales, UK Department of Obstetrics and Gynecology Dorothy A. Greenfeld, MSW Georgetown University School of Medicine Associate Clinical Professor Washington, DC USA Department of Obstetrics and Gynecology Director of Psychological Support Services Yale University School of Medicine Shady Grove Fertility Reproductive Science Center New Haven, CT USA Rockville, MD USA Director of Psychological Services Linda Hammer Burns, PhD Yale Fertility Center Assistant Professor New Haven, CT USA University of Minnesota Medical School Department of Obstetrics, Gynecology, and Women’s Jacqueline N. Gutmann, MD Health Clinical Associate Professor Minneapolis, MN USA Associate Director, Division of Reproductive Director of Counseling Services Endocrinology Reproductive Medicine Center Thomas Jefferson University Minneapolis, MN USA Philadelphia, PA USA Linda D. Applegarth, EdD Jean M. Haase, MSW Associate Professor of Psychology Social Worker Departments of Obstetrics & Gynecology, Reproductive Endocrinology and Infertility Reproductive Medicine, and Psychiatry Program Weill Medical College of Cornell University University Hospital New York, NY USA London Health Sciences Centre London, ON Canada Director of Psychological Services Institute for Reproductive Medicine Hilary Hanafin, PhD Weill Medical College of Cornell University Director of Counseling Services The New York Presbyterian Hospital Center for Surrogate Parenting New York, NY USA Beverly Hills, CA USA Eric Blyth, PhD Michaela Hynie, PhD Professor of Social Work Associate Professor University of Huddersfield Department of Psychology Huddersfield, England, UK York University Toronto, ON Canada Jacky Boivin, PhD Senior Lecturer and Associate Professor Nancy Stowe Kader, RN, PhD Cardiff University Director, Health Policy and Bioethics xi
- 14. xii LIST OF CONTRIBUTORS Pal-Tech, Inc. Louise U. Maier, PhD Arlington, VA USA Psychologist Private Practice Roger D. Kempers Avon, CT USA Professor of Obstetrics and Gynecology Emeritus, Mayo Clinic School of Medicine Christopher R. Newton, PhD Rochester, MN USA Assistant Professor Departments of Obstetrics & Gynecology and Immediate Past President IFFS Psychology Past Medical Director University of Western Ontario American Society for Reproductive Medicine London, ON Canada Editor Emeritus Fertility and Sterility Psychologist University Hospital, London Health Sciences William R. Keye, Jr., MD Centre Clinical Associate Professor London, ON Canada Department of Obstetrics and Gynecology University of Michigan William D. Petok, PhD Ann Arbor, MI USA Assistant Clinical Professor Director of the Division of Reproductive Department of Obstetrics and Gynecology Endocrinology and Infertility University of Colorado Health Sciences Department of Obstetrics and Gynecology Center William Beaumont Hospital Denver, CO USA Royal Oak, MI USA Psychologist Private Practice Sheryl A. Kingsberg, PhD Baltimore, MD USA Associate Professor Departments of Reproductive Biology and Psychiatry Krista Redlinger-Grosse, ScM Case Western Reserve University School of Medicine Instructor Cleveland, OH USA Genetic Counseling Graduate Program Chief, Division of Behavioral Medicine University of Minnesota Department of Obstetrics and Gynecology Minneapolis, MN USA University Hospitals of Cleveland Genetic Counselor Cleveland, OH USA Fairview-University Maternal Fetal Medicine Center Susan Caruso Klock, PhD Minneapolis, MN USA Associate Professor Departments of Clinical Obstetrics & Gynecology and Patricia L. Sachs, MSW Psychiatry Social Worker Northwestern University Medical School Shady Grove Fertility Reproductive Science Chicago, IL USA Center Psychologist Rockville, MD USA Northwestern Medical Faculty Foundation Covington & Hafkin and Associates Reproductive Endocrinology and Infertility Program Rockville, MD USA Chicago, IL USA Linda P. Salzer, MSS Donald B. Maier, MD Social Worker Associate Professor Private Practice Division of Reproductive Endocrinology and Englewood, NJ USA Infertility Department of Obstetrics and Gynecology Gretchen Sewall, RN, LICSW University of Connecticut Health Center Health Promotion and Counseling Service Farmington, CT USA Seattle Reproductive Medicine Director, Division of Reproductive Endocrinology Seattle, WA USA and Infertility President St. Francis Hospital and Medical Center Donor Secure Hartford, CT USA Edmonds, WA USA
- 15. LIST OF CONTRIBUTORS xiii Cheri Schoonveld, MS Affiliated Lecturer Assistant Professor Protestant University of Applied Genetic Counseling Graduate Program Sciences University of Minnesota Darmstadt, Germany Minneapolis, MN USA Christianne Verhaak, PhD Genetic Counselor Psychologist Fairview-University Maternal Fetal Medicine Center Department of Medical Psychology and Minneapolis, MN USA Obstetrics & Gynecology Margaret E. Swain, RN, JD Radboud University Medical Center Attorney Nijmegen, The Netherlands Private Practice Katherine E. Williams, MD Baltimore, MD USA Clinical Instructor, Associate Director Janet E. Takefman, PhD Department of Psychiatry & Behavioral Assistant Professor Sciences Department of Obstetrics & Gynecology Behavioral Neuroendocrinology Program McGill University Women’s Wellness Center Montreal, QC Canada Stanford University School of Medicine Director of Psychological Services Stanford, CA USA McGill Reproductive Centre Laurel N. Zappert, MS Montreal, QC Canada Clinical Research Associate Petra Thorn, PhD Stanford University Psychologist Department of Psychiatry & Behavioral Private Practice Sciences Moerfelden, Germany Stanford, CA USA
- 17. Foreword It is remarkable to see how much the specialty of infer- other major infertility organizations, such as the Amer- tility counselinghas matured and established itself since ican Society for Reproductive Medicine (ASRM) and the the publication, just six years ago, of the first edi- European Society of Human Reproduction and Embry- tion of this important book. I was privileged then, as ology (ESHRE). Within its educational mission, IICO I am again now, to write the Foreword for this text- provides postgraduate courses with national and inter- book, which has become the standard of reference national congresses as well as symposia, workshops, for the profession. As noted by the editors in their and social gatherings. These efforts generate informa- preface, the continuing enthusiasm that has welcomed tive dialogue among both medical and mental health this text both nationally and internationally has cre- professionals concerning critical legislation and regula- ated the demand to bring all critical chapters up to tions in other countries, practice guidelines, credential- today’s leading edge of knowledge, as well as to add ing of mental health professionals, research on the psy- several relevant and important new ones in this second chosocial aspects of infertility and medical treatment edition. outcomes, and creating standards of practice in infer- Today, with the continued rapid advances in the tility counseling worldwide. assisted reproductive technologies, there is a much All infertility professionals are indebted to coedi- clearer recognition of the psychosocial issues that may tors Sharon N. Covington, MSW, and Linda Hammer arise over the course of treatment for infertile patients Burns, PhD, as well as their distinguished contribut- as well as the critical role played in their management ing authors for making this textbook as complete and by mental health professionals. Infertility counseling comprehensive as it is, covering the breadth and scope has become an indispensable adjunct to the practice of the field. This new second edition will, ultimately, of reproductive medicine, particularly in those coun- make it possible to provide superior clinical care for all tries at the forefront of new developments in the field. patients worldwide. Not only have the editors provided It is gratifying to see that over recent years, infertility an invaluable service to their discipline by fostering counseling has gained appropriate recognition on an this important text, but they both continue to provide even broader international level, which is addressed in strong leadership in medical organizations at both the depth in Chapter 31, Global Perspectives on Infertility national and international levels. Linda Hammer Burns Counseling. Of note has been the collegial networking has played an indispensable role in organizing IICO and internationally among national counseling organiza- is currently its chair. Sharon Covington has been equally tions and mental health professionals that ultimately active as a founding member of the Mental Health Pro- led to the formation of an international association, fessional Group (MHPG) of ASRM, serving on many the International Infertility Counseling Organization ASRM committees, including the Society of Asssisted (IICO). IICO continues to grow and evolve, and cur- Reproductive Technologies (SART) Executive commit- rently it is made up of national organizations from tee and as chair, along with Linda Hammer Burns, of ten countries. IICO has a liaison with the International the MHPG of the ASRM. Both have contributed their Federation of Fertility Societies (IFFS) and also meets expertise through contributions to other professional regularly in conjunction with the annual meetings of texts and as reviewers for respected journals in the xv
- 18. xvi FOREWORD field, in addition to their mentoring of mental health advancing their field and helping to establish infertility professionals and clinicians new to the field of repro- counseling as an indispensable discipline in the inte- ductive health counseling. grated care of infertility patients. I have known and admired them both for many years, This book will benefit all who read it. As I wrote in going back to the time when I was editor-in-chief of my previous Foreword, it is designed for serious stu- Fertility and Sterility and it was my pleasure to be able dents and practitioners of infertility counseling. It will to publish a number of Sharon Covington’s important be a valuable resource text for medical libraries and will juried scientific contributions, as well as calling on both grace the personal libraries of mental health profession- as reviewers. Through their tireless efforts and devotion als, students of reproductive medicine, clinicians, and to excellence, both have distinguished themselves in educators alike. Roger D. Kempers February, 2006
- 19. Preface Writers are really people who write books not because they are poor, but because they are dissatisfied with the books which they could buy but do not like. – Walter Benjamin When we wrote (edited) the first edition of this book, pains, it has been successful in bringing together profes- our motivation was simple and straightforward: to pro- sionals from around the world, providing educational vide a definitive textbook on infertility counseling. We opportunities and a mechanism for professional collab- had worked in the field for a number of years, nurtured oration, and fostering the development of new infertil- its growth and development as a professional specialty, ity counseling societies. Dr. Roger Kempers, who was so and mentored many entering the field, yet there was no very helpful during his tenure at ASRM and supportive single, scholarly text for professionals. So, with this sim- of our first book, has been equally, if not more, helpful in ple idea the original text was born. Little did we realize the development of IICO in his position as chair of the the impact it would have on the profession of infertility International Federation of Fertility Societies (IFFS). counseling, the field of reproductive medicine, or on us, We owe him a special debt of gratitude not only for his both professionally and personally. We are still amazed professional and personal support, but for his unyield- when we hear (as we have many times) people around ing validation of the professional development of the world refer to it as ‘the purple bible.’ This text is not infertility counseling and a collaborative approach to an updated version of the original book, as is often the treatment of infertile patients in acknowledging the case, but a new book entirely that offers updated ver- importance of psychosocial aspects of infertility. sions of each chapter as well as several new topics. This It was not particularly surprising, as such, when our is not to say we did not think all of the topics from the ever loyal editor, Nat Russo, approached us with his original book were not important or relevant, but only usual enthusiasm and insistence about updating the that limits of space necessitated a reshuffling. As such, original text but with a more international perspective. the original text will remain relevant and the new one Although we willingly embraced the idea, little did we of equal and parallel importance. realize then how this new approach would exponen- Since the first edition was published, the profession of tially complicate the project, creating new and unique infertility counseling has evolved and so have our own challenges for us – as well as our contributors. professional perspectives. One of the most significant To our contributors who met these challenges with changes has been the development of an international varying degrees of dread and/or excitement, we owe a perspective on infertility counseling. This has been trig- very special thank you. All are respected (and busy) pro- gered by our own travel instincts (and Linda’s predilec- fessionals in their own right and their efforts here are tion for visiting infertility clinics wherever she travels) exceptional. We appreciate each of them for their pro- but also interest in our textbook that has brought us fessional expertise, effort, and time. A special thanks contacts, questions, and requests for consultations from to those who provided extra doses of personal encour- around the world. Recognizing this, Linda spearheaded agement and kindness – especially when our own spir- the formation of the International Infertility Counsel- its or stamina waned. Many of the contributors have ing Organization (IICO) – with the support and helpful played significant roles in the professional develop- guidance of Sharon who was a founding member of ment of infertility counseling worldwide and continue the Mental Health Professional Group of the American to do so through an array of professional activities. Society of Reproductive Medicine. Although IICO con- While many contributors were authors in the first edi- tinues to experience (as all new organizations) growing tion, some are new to this volume and, as such, faced xvii
- 20. xviii PREFACE unanticipated hurdles and problems. Despite the dis- Linda has remained at the University of Minnesota tinct trials and travails of this edition, we wish to express Medical School, Department of Obstetrics, Gynecology, our appreciation for each author’s willingness to con- and Women’s Health, and the Reproductive Medicine tribute their expertise and knowledge and for their Center. Although he is retired now, special thanks patience and tolerance of our suggestions, critiques, will always be owed to Dr. George Tagatz, who and ‘improvements’ of their work. Although we real- decades ago offered me a job and allowed me to ize we have become rather notoriously exacting edi- design and implement an infertility counseling pro- tors (applying the same exacting standards to our own gram that became an integral part of patient care and work), we hope (and think) that despite our often rigor- the model and impetus for this book. Dr. Theodore ous demands, we have kept their friendships and they (Ted) Nagel was there that day when Dr. Tagatz asked are well aware of our very deep appreciation. (on behalf of both of them), “Linda, how would As before, we must also thank our respective prac- you like to work here?” And despite the vicissitudes tices and colleagues. Over the years, Sharon has seen of our respective careers, we are both still here – her practice expand at Shady Grove Fertility Repro- in large part due to Dr. Nagel’s determined refusal to ductive Science Center from one office, one doctor, and allow either of us to retire – even when it seemed like five staff members, to one of the largest practices in the a good idea. Over the years, I have come to appreci- United States with eight offices, eighteen physicians, ate not only his professional mentoring but his quick and more than 250 employees . . . and still growing. The wit, extraordinary intelligence, and personal kindness. list of all the important people at Shady Grove who have He has, more than any other colleague, tolerated my helped and supported me along the way is too extensive big ideas (even when skeptical) and supported my var- to include, yet a few (though not exclusively) stand out: ious other commitments and interests without com- Dr. Robert Stillman, Dr. Michael Levy, Dr. Eric Widra, plaint – and more often than not, offered his own ideas and Dr. Arthur Sagoskin for helping me define the col- and insights. In addition, there are other professionals laborative reproductive healthcare model through their including physicians, nurses, and secretarial staff who respect and belief in psychological services (and me); have, over the decades, provided rewarding and edify- and nurses Karen Moore, Kathy Bugge, and Michele ing professional as well as personal relationships. These Purcell for their exceptional skill, compassion, and include, but, of course, are not limited to, Dr. Mark encouragement in our work together over the years. Damario; Bonnie Le Roy, MS; Mary Ahrens, MS; Selina Just as important are the extraordinary group of clini- Blatz, NP; Mary Danich, NP; Rosie Drechnik, NP; Deb cal social workers who have joined me in my practice – Pearo, RN; Neda Tasson, RN; Rachel Radman; and Patricia Sachs, Carol Toll, Ellen Eule, Erica Hanson, Kim Hockett. In addition, I owe a very special debt Michelle Hester, and Carol Miller. They have been of gratitude to colleague, mentor, and friend Sue V. patient with me throughout this revision, picked up Petzel, PhD. She has been there from the very begin- extra work without complaint, always kept their good ning as an exceptionally talented mentor and colleague nature despite my distraction, and continued to remind who I not only appreciate but respect immensely. Now, me of the importance of this project. I would also like after years of astutely avoiding the field of infertility to thank Dr. Larry Nelson at the National Institutes of counseling, she too has become intrigued with the field Health for giving me the opportunity to work on his and the fascinating patients we assist. A simple thank research team, and for his commitment to the psycho- you is really inadequate and, as such, it is my hope that logical needs of women struggling with premature ovar- she is well aware of how grateful I am for her profes- ian failure. Special appreciation goes to Nancy Hafkin, sional guidance and personal friendship. Finally, I feel PhD, my friend of more than forty years and cotherapist especially privileged and blessed to have had a career for more than twenty, for helping (and putting up with) that has been so intellectually stimulating and profes- me throughout this process with patience, humor, and sionally rewarding and has allowed me to work with when needed, clinical interpretation. Thanks, also, to colleagues who not only gave me respect and support, Linda Applegarth, EdD, who was a personal friend but an enjoyable camaraderie. before we began to share the journey in our professional As we continue to practice as infertility counselors, careers of infertility counseling and whose understand- we realize that it is our patients who have provided us ing and support have been so important to me along with the clinical experience and expertise to enable us the way. I feel so blessed to have had the opportunity to contribute to this field through professional devel- to do work that I love with people that I love working opment and writing. As such, we owe a special debt with. of gratitude to our patients, both past and present. In
- 21. PREFACE xix their suffering and resilience they taught us, and from we were forced to relinquish, and yet still they always their pain and transcendence we learned. We feel hon- supplied us with kindness, love, and a sense of humor – ored and privileged to have been included in their jour- particularly when our spirits lagged or our nerves were neys through infertility, pregnancy loss, childlessness, frayed. Once again, this book is dedicated to our very and for many, eventual parenthood. We are who we are special husbands and families including our newest today and who we have become (personally and pro- members, because it could never have happened with- fessionally) because of these special clients, and this out their blessing, love, and hard work, in addition to project (as with the previous book) would have been our own. impossible without them. Finally, we must thank each other. It was Sharon who It goes without saying that we are grateful to our noted that twice in her life she had “married some- families to whom we are not simply indebted – we are one I hardly knew” – once personally and once pro- probably overdrawn! Through the journey of this book, fessionally – and both times it has led to exceptional, we have seen the birth of Sharon’s first grandchild and long-lasting ‘marriages.’ Our collaboration and collab- the marriage of Linda’s daughter – in the same month! orative abilities continue to mystify even us. Although Throughout the usual family transitions, personal and we often felt at the end of our tethers and overwhelmed family crises, professional challenges, and daily hassles, by the work, we never felt that way with each other. our families have helped us keep our equilibrium (some- We have never disagreed or had a different vision of times tenuously) with their steadfast love and support. what this book could or should be. Somehow, despite Once again, our children offered generous assistance – both positive and negative stressors in our personal and even though they are now young adults with lives of professional lives, we were able to remain focused and their own and live (most of them) at some distance. working – usually due to large doses of humor and Again, our children were our computer experts (not only Sharon’s ever present reminder to ‘just breathe.’ The for us but for our contributors), research assistants, qualities that helped us through the first book (com- secretarial staff, and general aides-de-camp. We wrote munication, intelligence, good humor, and work ethic) through wedding plans, baby preparations, babysitting, have also made this book possible. And as before, we computer crashes, cross-country relocations, and natu- not only learned to appreciate each other more, but we ral disasters with our single-minded determination, cre- also learned a great deal about ourselves. For its own ating only slight (albeit justified) grumbles. Our hus- unique reasons, this book was more challenging than bands, despite their own crises and challenges, have the last, yet also more rewarding. In the end, we are not never wavered in their support of our work and this only appreciative and proud of the work we have pro- project, providing limitless encouragement and com- duced here, but of the friendship and collaboration that fort. More than anyone else, they have borne the brunt enabled it. of the stressful challenges of this book, tolerating our self-imposed work schedules, including working during Sharon N. Covington vacations, filling in on a myriad of responsibilities that Linda Hammer Burns
- 23. PART I. OVERVIEW 1 Psychology of Infertility LINDA HAMMER BURNS AND SHARON N. COVINGTON A child within my mind. I see The eye, the hands. I see you also there. I see you waiting with an honest care, Within my mind, within my body. . . . – Elizabeth Jennings Yearning for children and the heartbreak of barren- Divorce, polygamy, and extramarital affairs remain, as ness have been a part of life since the beginning of they have long been, social solutions to infertility, as do mankind, chronicled throughout history by religious various forms of adoption and fostering. Examples of accounts, myths, legends, art, and literature. Whether other social solutions include the continuing practice driven by biological drive, social necessity, or psycho- in some cultures of multiple wives in response to infer- logical longing, the pursuit of a child or children has tility (or lack of a son) or the custom in some cultures compelled men and women to seek a variety of reme- requiring a sibling (usually an eldest son) to provide one dies, sometimes even extreme measures. In fact, in all of his children to a younger, childless sibling. Commu- cultures involuntary childlessness is recognized as a cri- nity involvement in the realignment of social relation- sis that has the potential to threaten the stability of indi- ships is exemplified by the native peoples of two small viduals, relationships, and communities. Every society islands off the coast of South America in which infertil- has culturally approved solutions to infertility involv- ity was addressed by raiding the neighboring island to ing, either alone or together, alterations of social rela- steal small children for childless women. Demonstrable tionships (e.g., divorce or adoption), spiritual interces- in each of these examples is the social and emotional sion (e.g., prayer or pilgrimage to spiritually powerful distress and expense of solutions involving the alter- site), or medical interventions (e.g., taking of herbs or ation of social relationships, thus explaining, in part, consultation with ‘medicine man’).[1] While spiritual the reluctance of individuals to pursue these alterna- and medical remedies for infertility are common and tives until other remedies have been exhausted. often used early on by infertile couples, social solu- Since antiquity, the appeal of religious faith and the tions demanding the alteration of relationships have power of belief in spirits and gods as a remedy for been shown to be the last alternative individuals or infertility can be found in all cultures. Fertility sym- couples usually consider.[1] Typically, infertile couples bols, special gods, and fertility rites and customs are are reluctant to jeopardize or disturb close relation- apparent from the highly erotic art of India, to the ships (perhaps because social changes are usually per- Celtic goddess of fertility carved into stoned walls of manent) because they hope or believe infertility will be ancient Irish castles, to specially shaped and painted a temporary problem. By the same token, reluctance to Navajo pottery. In ancient Greece, a common offering consider solutions may be due to the hope and promise to the gods was terracotta votives in the shape of the often attributed to medical and/or spiritual interven- affected organ (e.g., vagina, uterus, or penis).[2] In addi- tions. Nonetheless, infertile couples use all three mea- tion, the special spiritual power of certain places to sures – social, spiritual, and medical – as remedies for enhance fertility can be seen in a phallic-shaped rock their involuntary childlessness; numerous examples of on the island of Maui in Hawaii, as well as in the pil- these remedies exist throughout history and across all grimages made by infertile women of the Carib tribe in cultures.[1] One of the most renowned social solutions Mexico to Isla de las Mujeres (Island of Women) and by to involuntary childlessness is King Henry VIII of Eng- many infertile Roman Catholic women to Medjugorje land, who changed the religion and laws of a country to in Bosnia-Herzegovina. Nevertheless, the importance accommodate the need for a child (albeit a male child). of faith either as a means of solving infertility or as a 1
- 24. 2 LINDA HAMMER BURNS AND SHARON N. COVINGTON source of comfort cannot be minimized, and religious Infertility counseling, as an emergent specialty within faith remains a powerful resource (or painful burden) the mental health professions, has gained recognition for many infertile individuals around the world, even and respect for its professional contributions through today. patient care, research, and education as well as for the Infertility affects between 80 million and 168 mil- identification of the need for expert care and treatment lion people in the world today. Approximately one of this unique population in conjunction with com- in ten couples experience primary and/or secondary plex medical treatment. In this book the term infertil- infertility.[3,4] The majority of men and women live ity counselor refers to any mental health professional in the developing world, are infertile due to sexually (e.g., social worker, family therapist, psychiatrist, or transmitted diseases or underlying, untreated health psychologist) who has special training in reproductive conditions (e.g., malnuitrition) while in the develop- medicine. In fact, a major goal and purpose of this book ing world increasing age in women is a major causal is to define the standard of care and practice, profes- factor in infertility.[5] Global rates of infertility vary sional competency, and legal responsibilities for infer- dramatically – from prevalence rates of about 5% in tility counselors worldwide by providing a knowledge some developed countries to as high as more than base on which to provide optimum clinical care with 30% in sub-Saharan Africa.[6] Rates of primary infer- evidence-based therapeutic interventions. tility worldwide are generally 1 to 8% with rates of sec- As a clinical textbook, this book provides a compre- ondary infertility reaching as high as 35%. The rates of hensive overview of the array of clinical issues and infertility are the highest in the world in what has been therapeutic interventions useful for the practicing infer- termed the ‘infertility belt,’ stretching across central and tility counselor as well as for the mental health pro- southern Africa.[7] fessional who encounters a few patients with repro- Although infertility is a global issue impacting ductive issues (current or past) requiring a clinical individual and social well-being, the wide variance in understanding of the relevant issues. This textbook incidence rates contributes to significant and unique (like its predecessor) has eight sections that reflect psychosocial consequences as a result of where an the breadth of the experience and issues confronted individual experiences involuntary childlessness. This by individuals and couples experiencing infertility: ‘stratification of infertility’ refers to the ways in which assessment; treatment modalities; medical counseling the infertility experience is affected by economic, social issues; third-party reproduction and other means of welfare, and public health issues. These issues include alternative family building; postinfertility issues; and the preponderance of poverty, malnutrition, obesity, infertility counseling practice issues. Each chapter fol- smoking, sexually transmitted diseases, or other condi- lows the same format regardless of the topic addressed tions that impact general health and/or fertility; igno- in the chapter: an introduction to the topic, historical rance of reproduction, sexual health, and/or fertility overview, review of the literature, clinical issues, thera- preservation; lack of availability or access to high- peutic interventions, and future implications. This for- quality medical treatments; and/or the inability to mat is designed to provide both students and profes- access medical treatments for cultural, religious, or sionals with a consistent and predictable treatment of legislative reasons. Any and all of these factors can each topic and a basis for comparison across topics, and do contribute to infertile individuals traveling thereby enabling optimum and professionally compe- across national or international borders in pursuit of tent clinical care using evidence-based practice princi- medical treatments to facilitate reproduction and/or ples. This chapter outlines the scope and depth of issues parenthood – a phenomenon often termed ‘reproductive involved in infertility counseling including: tourism.’ In short, as a global condition, infertility is not ■ A historical overview of medical approaches to infer- only a medical condition but also a social and emotional tility and the emergence of infertility counseling in col- condition, in which a shift in emphasis has occurred laborative patient care; from coping with childlessness through social means (e.g., participating in rearing the children of others) to ■ A review of advances in the scientific study of psy- a dependence on medical interventions – even when chological responses to infertility; accessing them can be challenging.[8] This process has ■ A discussion of the importance of theoretical frame- been referred to as the ‘medicalization of infertility’ – works as a basis for developing clinical interven- the phenomenon in which healthy, yet childless, indi- tions, including relevant infertility-specific psycholog- viduals become patients, undergoing an array of med- ical theories; and ical treatments and assuming the passive patient role ■ A summary of clinical issues and therapeutic inter- in patient–physician interactions – all in pursuit of ventions, which will provide a context for the chapters parenthood.[9] in this text.
- 25. PSYCHOLOGY OF INFERTILITY 3 HISTORICAL OVERVIEW their reproductive abilities but also to blaming women when conception and pregnancy failed. Throughout The Trobrian Islanders attributed pregnancy to spirits, history and across cultures, there are countless exam- not sexual intercourse. Chukchi female shamans said ples of social, religious, and cultural glorification, even they made children via their sacred stones, not through idealization of motherhood, and the vilification and sexual intercourse or any contribution from men. Aus- maltreatment of infertile or ‘barren’ women. Infertile tralian Ingarda peoples thought women became preg- women were (and still may be) accused of witchcraft; nant by eating special foods or by embracing a sacred socially isolated and ostracized; physically abused; tree hung with umbilical cords from previous births. divorced, abandoned, or forced to accept their hus- The Batak peoples believed no woman could become band’s additional wives; or murdered (often by their pregnant unless umbilical cords and placentas were husband or their husband’s family). In Japanese, the buried under her house.[10] Ancient Hindus believed word for infertile women is umazume, which is liter- that conception was facilitated by the worship of the ally translated as ‘stone woman.’ The characters used lingam (erect penis) and yoni (female genitalia) and that spell ‘no-life woman’ or ‘nonbirthing woman.’ Umazume a hole in a rock or cloven tree symbolized the female is considered one of the worst words in the entire birth passage. Therefore, a woman could improve her Japanese language and it is rarely used because, accord- fertility by passing through a hole in trees or rocks – a ing to traditional custom, the presence of a stone ritual that continues to be practiced in some parts of woman could make a whole village wither.[13] In var- the world even today.[11] ious African, Asian, and Pacific cultures men fear(ed) Women in ancient Africa were encouraged to eat the female vaginal blood, which is not only viewed as pol- eye of a hyena with licorice and dill to aid concep- luting but also thought to weaken any man touched tion that was guaranteed to occur within three days by it.[14] while Siberian women were encouraged to eat spiders Science altered our understanding of reproduction to facilitate conception.[11] According to African cus- and fertility when, in 1677, Dutch scientist Anton tom, to ensure pregnancy men applied a special powder Leeuwenhoek became the first to identify spermatozoa made from the crushed roots of nine trees to the penis with the newly invented microscope. In 1765, through to enable sexual intercourse three times a night, while experiments with dogs, Italian priest and physiolo- African women used vaginal pessaries made of wool gist Lazzaro Spallanzani became the first to discover dipped in peanut oil and wrapped in two cloves of gar- that mammalian reproduction required both the male lic.[12] In ancient Arabia, amulets and/or fertility sym- sperm and female oocyte, that is, that the embryo bols were commonly worn as pendants to encourage was the “product of male seed, nurtured in the soil conception, particularly by Egyptian women. Addition- of the female.”[15] However, it was not until the nine- ally, many cultures used fertility fetishes and symbols teenth century that human reproduction (and infertil- such as statuettes of pregnant females or of males with ity) became more clearly illuminated. In 1826, German large phalluses to maximize fertility.[11] Even today, biologist Karl von Baer discovered the mammalian amulets, herbal remedies, and traditional rituals con- oocyte and identified mammalian embryonic develop- tinue to be used by many infertile men and women, ment of animals. Together with Heinz Christian Pan- often in conjunction with conventional medical treat- der and based on the work by Caspar Friedrich Wolff, ment, in hopes of achieving the longed-for pregnancy he described the germ-layer theory of embryologi- (child). cal development and the principles that became the In antiquity, menstruation and fertility were believed foundation for comparative embryology.[16] The next to be influenced by the waxing and waning of the moon. year, Swiss physiologist and histologist Albert von Kol- As a result, astrology and numerology were consid- liker identified the function of spermatozoa and that ered important fertility treatments by providing cor- sperm originated from the testes. In 1839, Augustus rect numbers and/or days of the month for maximiz- Gendrin suggested that ovulation controlled menstru- ing fertility and achieving pregnancy. It is generally ation, thereby dispelling the long-standing belief that accepted that ancient peoples had little understanding menstruation was controlled by the moon and lunar of human reproduction and as such sterility. With lit- phases. tle understanding of the equal contributions of male By the early twentieth century, the pieces of the repro- and female reproductive cells or the role of sexual inter- ductive puzzle were beginning to fall into place. Still, it course in fertilization, reproduction was thought to be a was only in the middle of the twentieth century and later singularly female phenomenon and the role of the male that physicians medically addressed infertility as a cou- was considered unnecessary and/or ceremonial. This ples issue in which both partners were medically evalu- ignorance probably contributed to valuing women for ated rather than viewed as a woman’s medical problem
- 26. 4 LINDA HAMMER BURNS AND SHARON N. COVINGTON (defect).[17] Nevertheless, infertility treatment contin- infertile couples. It may be argued that medical solu- ued to maintain a paradigmatic example of a medical tions to involuntary childlessness became even more situation in which throughout much of its history physi- powerful and appealing to the infertile by the end of cians were men, patients were women, and the focus of the twentieth century with the advent of assisted repro- medical treatment was on the sexual organs.[8] Despite ductive technologies and advanced third-party repro- evidence that men were and are infertile as often as duction. women, throughout history and across cultures, women have disproportionately borne the medical, social, and REVIEW OF LITERATURE cultural burden of a couple’s failure to conceive. This is a situation that has become even more prominent Original investigations into the psychological aspects of with the advent of assisted reproductive technologies infertility focused on individual psychopathology (par- in which the female partner undergoes disproportion- ticularly in women), sexual dysfunction, and infertility- ately more treatment, regardless of the etiology of the specific distress. Furthermore, early research was infertility diagnosis.[8] This paradigm did not dramat- largely based on theoretical speculations or anecdotal ically shift despite the advent of assisted reproductive information rather than scientifically rigorous inves- technology (ART), which began with the birth of Louise tigations. Much of the research focused on psycho- Brown in Great Britain in 1978. Her conception via in logical distress, was exploratory, relied on researcher- vitro fertilization (IVF) was the result of the ground- designed instruments rather than standardized mea- breaking work of British physicians Patrick Steptoe and sures, lacked control or comparison groups, and was Robert Edwards which began the modern era of human plagued by small numbers. While research on the med- reproduction in which reproduction did not require sex- ical aspects of infertility has expanded exponentially, ual intercourse, used an array of assisted reproductive research on the psychosocial aspects of infertility con- technologies, and could be facilitated by various forms tinues to lag behind by comparison. Nevertheless, the of donated gametes, embryos, and surrogacy. overall quality and quantity of studies have dramatically Infertility counseling, as a profession, emerged improved in recent decades with an increasing number almost in tandem with the major medical advance- of infertility counselors acting as researchers investigat- ments in the field of reproductive medicine, particu- ing a wider array of issues such as the impact of stress larly assisted and third-party reproduction. Although on infertility; gender differences in response to inferti- the psychological impact of infertility was addressed in lity; cross-cultural issues; and complicating medical the literature beginning in the 1930s, infertility counsel- conditions. ing has emerged as a recognized profession and mental Recently, the focus of research on the psychological health specialty only within the past thirty years.[18] aspects of infertility has shifted from individual psy- Historically, the role of the mental health professional chopathology to more holistic/interactive views of infer- in the treatment of infertility was to cure the infer- tility and to the impact of advancing assisted reproduc- tile patient’s neurosis thereby curing their infertility. tive technologies. Consequently, there has been a shift This approach fell into disfavor in the 1970s as men- from a singular focus on the individual to assessments tal health professionals working in infertility clinics and interventions aimed at groups, such as couples and began providing psychological support, crisis interven- families. In addition, while research and clinical expe- tion, and education to ameliorate the stress of infertil- rience continue to indicate that the vast majority of ity and enhance the patient’s quality of life.[19] Today, infertile men and women do not experience significant the role of the infertility counselor has expanded to levels of psychological trauma or psychopathology, the meet the psychosocial challenges of assisted reproduc- use of advanced medical technology and/or third-party tion and includes assessment, support, treatment, edu- reproduction involving a plethora of additional stres- cation, research, and consultation.[18,20,21] sors may increase psychological distress during specific Throughout history and across cultures, medical periods of the treatment cycle. As such, investigations solutions to infertility have been diverse and varied such into responses to assisted reproduction have involved as relics, charms, incantations, eating special foods, the interactive aspects of medical technology and indi- vaginal treatments, treatments to enhance male sexual vidual and couple response, as well as medical outcome. potency, and special potions and/or poultices. Whether In addition, the focus of both medical and psychoso- ‘primitive’ medical treatments or the more sophisti- cial research has become more ‘evidence-based’: how cated assisted reproductive technologies of today, med- research findings can provide direction for the identi- ical treatments for infertility have always been actively fication of clinical issues and therapeutic interventions pursued and held particular power and influence for that are most beneficial and effective.
- 27. PSYCHOLOGY OF INFERTILITY 5 Van Balen and Inhorn contend that research on the acknowledged the challenges of lack of heterogeneity psychosocial aspects of infertility has historically been in the developing world particularly regarding assisted hampered because infertility was: (1) considered a med- reproductive technologies, inconsistent access to or ical condition rather than a social problem worthy availability of quality infertility services in the devel- of social analysis (particularly in Western societies); oping world, as well as the lack of consistent standards (2) a taboo subject not easily talked about even in ‘neu- regarding the quality of infertility services.[3] By con- tral’ research settings; (3) an issue emerging in West- trast, little attention has focused on the psychosocial ern societies at a time of changing social beliefs about needs and/or the provision of mental health services in parenthood, women’s roles, and the importance of chil- the developing world. Similar challenges exist regard- dren in the lives of men and women; and (4) research- ing the wide variation of attitudes regarding counsel- focused on psychosocial responses to assisted reproduc- ing and mental heath services and the lack of consis- tive technologies and less on the experience of invol- tent standards regarding the quality of available infer- untary childlessness or ‘disrupted reproduction’ and its tility counseling services. As such, underserved, cultur- impact on the lives of individuals and couples.[22] ally diverse, infertile couples seeking infertility treat- In recent decades, however, infertility has gained ment either in their home country or across interna- increasing attention from various social and behav- tional borders remain an area that not only received ioral scientists who have brought a wider variety of minimal research attention, but, as a result, also failed investigative approaches and research methods, in con- to benefit from clearly identified clinical and therapeu- trast to traditional psychologically oriented qualitative tic interventions based on research evidence. and quantitative methods. Examples of new research methodologies include the ethnographic model typ- Psychosocial Interventions for Infertility ically used in anthropology,[23] in which data are collected on the basis of reproductive life histo- For several decades the provision of psychosocial sup- ries and/or narratives in individual studies;[24–27] port and/or counseling services have been requested by grounded-theory methodology; discourse analysis (e.g., patients, suggested by professionals, legislated, and/or the analysis of newspaper accounts);[28] and ethno- recommended on the basis of evidence-based research. graphic, qualitative case studies.[29] These are but a few Infertile patients have requested psychological services examples of the different research approaches that pro- in conjunction with or as an adjunct to medical treat- vide different perspectives, exciting insights, and impor- ment for infertility[31–33] or through consumer advo- tant findings that help provide a greater understanding cacy organizations (e.g., ISSUE, ICSI, CHILD, Resolve). of the psychosocial impact of infertility, thereby facili- Recommendations for infertility counseling have also tating the work of infertility counselors by identifying been mandated by legislation and/or regulatory bod- significant clinical issues and/or beneficial therapeutic ies.[34–39] At the same time, infertility counseling ser- interventions. vices have been recommended and/or mandated by While the scientific rigor of psychosocial investiga- medical professional organizations, most often in con- tions has dramatically improved, some significant gaps junction with specific medical treatments.[40–43] Men- in the research remain, particularly regarding the psy- tal health professionals have also made recommenda- chosocial needs of the underserved (reproductive strat- tions for the provision of psychological counseling ser- ification) as well as the counseling needs of culturally vices.[20,21,44–46] diverse patients and reproductive tourists. A continuing In a review of current research, Boivin addressed the and significant problem regarding research on the psy- effectiveness of psychosocial interventions for infertil- chosocial issues of involuntary childlessness is that the ity in terms of the following questions: 1) Do psychoso- preponderance of research to date has focused predom- cial interventions improve well-being?, 2) Do psychoso- inantly on white, heterosexual women living in devel- cial interventions increase pregnancy rates?, and 3) Are oped countries and who, generally, are better educated some interventions more effective than others?[47] The and have higher socioeconomic status. Far less research review involved a systematic search of all published and has focused on culturally diverse men and women with unpublished papers in any language and any source that limited financial or education resources, from devel- (1) described a psychosocial intervention and (2) eval- oping countries, and/or who have limited access to uated its effect on at least one outcome measure in an treatment or specifically assisted reproduction.[30] The infertile population. A total of 380 studies met the cri- World Health Organization (WHO) has recognized the teria but only 7% were independent evaluation stud- importance of sterility as a health issue of global con- ies. Analysis of these studies showed that psychosocial cern, particularly in developing countries. WHO has interventions were more effective in reducing negative
- 28. 6 LINDA HAMMER BURNS AND SHARON N. COVINGTON affect than in changing interpersonal functioning (e.g., improving well-being, and/or enhancing the outcome of marital and social functioning). Pregnancy rates were treatment. unlikely to be affected by psychosocial interventions. While the focus of the academic approach in It was also found that group interventions that had medicine and counseling is research, the focus of the emphasized education and skills training (e.g., relax- applied or clinical approach to medicine and counseling ation training) were significantly more effective in pro- is implementation of knowledge gained from research ducing positive change across a range of outcomes for the immediate and practical benefit of individuals, than counseling interventions that emphasized emo- couples, and families. In fact, clinicians and researchers tional expression and support and/or discussion about do not have mutually exclusive roles and many infer- thoughts and feelings related to infertility. Men and tility counselors are involved in both research and women were found to benefit equally from psychoso- clinical work (i.e., application of research findings) to cial interventions. This review highlighted the lack of some extent over the course of their careers. The basic well-controlled, scientifically rigorous studies based on premise of applied psychology is the use of psychologi- classic experimental methods. This review examined cal principles and theories to overcome practical prob- thirty years of research, yet produced only twenty-five lems (e.g., reproductive medicine or health psychology). independent studies evaluating psychosocial interven- Infertility counseling is a specialty area with specific tions for infertile individuals of which only eight met theoretical frameworks, clinical issues, and therapeutic minimum requirements for good quality studies. By interventions based on the scientific model of evidence- contrast, during the same period almost 400 papers based medicine or treatment. were published in which psychosocial interventions for Theoretical approaches to infertility and, as such, infertility were strongly recommended. In short, there infertility counseling have historically been based on remains a significant, even urgent need for high qual- a specific theoretical perspective or specific principles ity studies to unequivocally address the effectiveness of of theories adapted and applied to infertility. Recently, psychosocial interventions. Boivin suggests that future interest in developing infertility-specific theoretical research should address (1) who benefits from psycho- frameworks, that contribute to a greater understand- logical interventions, (2) which types of interventions ing of the psychosocial impact of infertility, has been are most beneficial to which patients, and (3) when growing. Infertility-specific theoretical frameworks aid is the optimum time to provide psychological inter- infertility counselors as both researchers and clinicians ventions. In summary, by not simply recommending, by identifying the psychosocial phenomena of infertil- but by providing evidence-based research through con- ity, relevant issues, treatment modalities, and benefi- trolled investigative methodology, infertility counselors cial interventions to minimize psychosocial distress and can provide more effective psychological interventions trauma. with greater confidence. Evolution of Infertility-Specific THEORETICAL FRAMEWORK Theoretical Frameworks In both psychology and medicine, theories or theoreti- Over the years, infertility-specific theoretical frame- cal frameworks are the basis for the academic scientific works have evolved from what have been termed psy- method. Theories (as a collection of interrelated ideas chogenic infertility theories or psychosomatic medicine and facts) are developed to describe, explain, predict, approaches, in which demonstrable psychopathology and/or change (manage) behavior or mental processes. was thought to play an etiological role in infertility.[48] The purpose of theories is to better understand previous The foundation of psychogenic infertility theories was conditions that led to a thought, behavior, interaction, Freudian psychoanalytic approaches in which psycho- or phenomenon. As such, the scientific method involves logical (and medical) disorders were thought to be due (1) stating the problem, (2) forming a theory, (3) devel- to an individual’s unresolved conflicts and/or an uncon- oping a hypothesis, (4) testing the hypothesis through scious defense mechanisms that caused or contributed a variety of research methods, and (5) replicating the to sterility.[49] The psychogenic infertility model (also results of the tested hypothesis. As such, theories or the- sometimes referred to as the psychosomatic medicine oretical frameworks are a fundamental component of approach) was introduced in the 1930s and reached the research process, while at the same time facilitating its height of popularity during the pronatalist period and enhancing patient care by identifying relevant clini- of the 1950s and 1960s, particularly in the United cal issues and therapeutic interventions most beneficial States. At a time when up to 50% of infertility prob- and effective in curing or ameliorating sympomatology, lems could not be accurately medically diagnosed or
- 29. PSYCHOLOGY OF INFERTILITY 7 treated, psychological explanations of potential causes psychological consequences approach that included the or treatment modalities were considered helpful and recommendation of psychological support services in reasonable. However, the vast majority of these theories conjunction with or as an adjunct to infertility treat- focused on psychological (and subconscious) distur- ment.[59] This model was initially presented using a bances in women, contending that neurotic conflicted combination of theoretical frameworks including devel- feelings about motherhood or their own mothers pre- opmental models, crisis theory, bereavement models, vented conception and the assumption of adult roles. and a predictable pattern to develop a stage theory Fischer described two personality styles in women con- of infertility. Accordingly, the inability to procreate tributing to infertility: the weak, emotionally imma- impaired the completion of adult tasks of intimacy and ture, overprotected type, and the ambitious, masculine, generativity creating a period of emotional disequilib- aggressive, and dominating career-type.[50] The ‘weak’ rium, with the potential for either maladjustment or woman was thought to be unable to separate or dif- positive growth facilitating resolution and homeosta- ferentiate from her mother or express her anger in a sis for individuals or couples. Furthermore, infertility direct fashion, or she had an abnormal fear of sex, moth- evoked typical feelings and psychological responses to erhood, pregnancy, and labor that inhibited reproduc- infertility that followed a predictable pattern based on tive ability. ‘Ambitious’ women were infertile because the stages of bereavement; involved recognition of the “becoming pregnant meant accepting sexual feelings, loss; gave meaning to the experience and attained effec- being comfortable in competing with a stronger mater- tive resolution through personal growth; and overcame nal figure, giving up the fantasy of remaining a child, the losses of infertility.[59] and not having to compete with an unborn child.”[51] In general, the psychological sequelae approach pro- Typically, ‘psychogenically infertile’ men were thought vided a broad view of the interrelationships of individ- to have domineering mothers who over controlled their ual, couple, family, society, and reproductive medicine; sons by threatening withdrawal of love, expecting con- integrated different theoretical frameworks; conceptu- formity to their rigid moral codes, or creating anx- alized infertility as a major life crisis involving stress iety within their sons as a result of their own sex- and grief; and provided a framework for the provision of ual inhibitions.[52] Men, too, were thought to have counseling services. As such, the psychological sequelae conflicted feelings about parenthood or masculinity model was valuable in stimulating the development of causing infertility.[53] This theory was recycled dur- consumer advocacy and support organizations; increas- ing the sexual revolution of the 1960s in descriptions ing awareness among mental health and medical pro- of the ‘new impotence’ – men experiencing impotence fessionals of the importance of the psychosocial aspects as a result of performance pressure from ‘liberated’ of infertility; and legitimizing adjustment to infertility women who expected sexual encounters to be mutually as a problem worthy of empirical study.[60] Still, the rewarding.[54] psychological sequelae approach was not without flaws Psychogenic infertility theories fell into disfavor partly and criticism in that it continued to apply a medical as a result of the increased ability of reproductive model to the complex psychosocial experience of infer- medicine to diagnose and treat infertility problems. tility and failed to consider the social and cultural fac- During the past thirty years, infertility of unknown eti- tors influencing the experience of involuntary childless- ology has been significantly reduced in large portions ness and treatment for it.[30] of the world, eliminating the necessity and/or feasibil- Subsequently, several different approaches have ity of psychological causes of reproductive failure. More been suggested including the psychological cyclical importantly, several reviewers of the psychogenic infer- model,[61] the psychological outcome approach,[30] and tility literature concluded that the preponderance of the psychosocial context approach. According to the studies revealed no consistent or striking evidence of psychological cyclical model, involuntary childlessness psychological causes of infertility.[55–58] increases stress levels causing physiological changes Subsequently, psychological sequelae or psychological that influence treatment outcome. As such, the cyclical consequences theories emerged during the late 1970s in model suggests that the psychological distress of infertil- the United States and a worldwide consumer movement ity can and does have biological consequences that can emphasizing that experience of infertility and treatment (and may) influence conception whether or not medi- for it are emotionally difficult and all-encompassing, cal treatment is used.[62] However, the cyclical model impacting all aspects of an individual and couple’s historically failed to address stress levels in the male life. Hence, infertility was the consequence and not the partner and/or identify what levels of stress were signif- cause of involuntary childlessness.[30,59] Menning was icant (and counterproductive) for specific individuals one of the first to suggest a psychological sequelae or under particular circumstances or situations.
- 30. 8 LINDA HAMMER BURNS AND SHARON N. COVINGTON The psychological outcome approach is, to some ical research, clinical practice, psychotherapeutic inter- extent, an elaboration on the psychological cyclical ventions, and social policy issues acknowledging the model in that it involves an integrated mind–body, fam- universal and global context in which infertility is expe- ily system, and biopsychosocial perspective to research rienced and in which treatment is provided both medi- and clinical practice and recognizes the influence of cally and psychologically.[30] As noted throughout this psychobiological factors (e.g., stress) on conception and book, how theoretical frameworks have been devel- treatment outcome. The focus of the psychological out- oped and/or applied in infertility vary according to the come approach is the psychosocial response to infertil- issue or topic being addressed. As such, the psychoso- ity treatment of individuals, couples, and subsequent cial context approach to theoretical frameworks in infer- families as well as psychotherapeutic interventions that tility may be more relevant as it acknowledges that impact treatment outcomes. An example is the Heidel- the theoretical framework of individual identity may berg Model,[46] in which solution-focused counseling be highly applicable to individual psychotherapy or was found to be helpful for infertile couples, particu- psychopathology but less useful within the context of larly couples who were highly stressed and who experi- cross-cultural counseling, while stress and coping the- enced deterioration of mood and sexual problems over ories or bereavement theories may have more universal the course of treatment. application. The psychosocial context approach addresses how infertility is an experience that occurs within a social Infertility-Specific Theoretical Frameworks structure (e.g., marriage, family, community, and cul- ture) and context (e.g., culture or religion). Although Grief and Bereavement Approaches infertility can be a painful psychological trauma and Infertility involves grief and loss whether it is a life-altering phenomenon that is isolating and stigma- profound distinct loss at the onset of treatment or a tizing, it is not simply an individual psychological expe- gradual accumulation of losses over time. The losses rience but a social experience that occurs within the of infertility may involve the loss of individual and/or context of the individual’s or couple’s life and social couple’s health, physical and psychological well-being, milieu. As such, infertility is better understood as a life goals, status, prestige, self-confidence, and assump- ‘process’ rather than a single event or series of iso- tion of fertility, loss of privacy and control of one’s body, lated events. The psychosocial context approach is also and anticipatory grief at the possibility of being child- a less individualistic model that takes a more holistic, less.[63,64] Grieving may also involve mourning rela- global approach to understanding the psychosocial phe- tionships altered by infertility whether allowed to slip nomena of infertility and the provision of treatment. away or actually lost or forever changed. As with any It addresses cultural, religious, and environmental fac- grief response, the level of attachment (the desire for tors (e.g., natural or manmade disasters such as hur- parenthood, child, or baby) is directly proportionate to ricanes or terrorist attacks) that can and do inten- the level of grief an individual or couple experiences. sify or somehow influence the infertility experience for As such, infertility may typically involve grief responses individuals and couples. Furthermore, the psychoso- such as shock, disbelief, anger, blame, shame, and guilt, cial context approach addresses the issues of stratifica- while over time, feelings of loss of control, diminished tion of medical and mental health services for infer- self-esteem, chronic bereavement, anxiety, and depres- tility (e.g., uneven availability of infertility treatment sion may persist. services); reproductive tourism (e.g., culture clashes Building on bereavement approaches to infertility, when patients travel across borders for reproductive Burns and Covington suggested the keening syndrome treatment); and, finally, the influence of culture and/or of infertility-specific grieving.[21] Within this context religion on psychosocial response to infertility as well as keening refers to the traditional Irish custom of griev- the acceptability of medical treatments, mental health ing in which women weep and wail while preparing care, and/or family-building options. the deceased for burial, while men watched in somber Ultimately, both the psychological outcome and psy- silence (often sharing alcoholic beverages which typ- chosocial context approaches provide perspectives by ically lead to the cultural phenomenon known as the increasing our understanding of individual, couple and ‘Irish Wake’). The keening syndrome of infertility refers cultural differences, providing greater knowledge of to the way in which many couples grieve the losses of clinical issues and effective therapeutic interventions to infertility: Women weep and men watch – with men improve patient well-being and response to treatment. often emotionally distancing themselves from the cou- Ultimately, theory development in infertility should ple’s shared loss. This phenomenon can result in hus- expand even further to include the integration of empir- bands becoming the ‘forgotten mourners’ because the
- 31. PSYCHOLOGY OF INFERTILITY 9 husband is less verbal and expressive with his grief or Individual Identity Theories unable to express it in the same open manner as his wife. Infertility as an experience that alters an individual’s Ultimately, failure to acknowledge and appropriately identity and sense of a self was suggested as integra- grieve the losses of infertility has an impact on a couple’s tion of infertility into sense of self model by Olshansky, long-term adjustment to infertility, as well as prospec- who contended that the internalization of the infertil- tive decisions regarding treatment and family-building ity experience is instrumental in managing the narcis- alternatives. In many ways, this approach highlights not sistic wounds of infertility.[27] According to this theo- only gender differences in grief and mourning but also retical approach, infertility alters an individual’s sense how women often assume the role of primary mourner, of self by creating or exacerbating feelings of defi- bearing an unequal share of the emotional burden of a ciency, hopelessness, and shame. Both infertile men and couple’s grief. Some have suggested that this is because women experience altered self-concept and self-image women are proportionately more distressed than men, as a result of infertility, although they may experience it while others argue that it represents a common mari- differently. Women often feel inadequate and deficient tal or cultural pattern in which women assume greater for failing to fulfill personal and societal roles, while responsibility for the couple’s emotional well-being men often feel inferior, ashamed, and angry. In short, and expressiveness. It may also reflect how infertility whether infertility involves an actual pregnancy loss or treatment is disproportionately geared toward women. the loss of the couple’s wished-for child, it is a loss that By contrast, Unruh and McGrath objected to the is experienced as a narcissistic injury as well as a sym- application of traditional grief and loss theory to infer- bolic loss of self.[67] A core concept of this theory is tility because it failed to address the ongoing, chronic that individuals experiencing infertility must integrate nature of infertility.[65] They identified infertility as and incorporate infertility into their individual identity, a chronic sorrow for the infertile, typically involving sense of self, or self-definition. In so doing, the indi- numerous losses over an extended period of time. In vidual is then able to move beyond a personal iden- fact, infertility-specific grief may never be completely tity of oneself as ‘infertile’ and transcend the experience mourned, transcended, or fully integrated. According to through overcoming, circumventing, or reconciling the the chronic infertility-specific grief model, even after par- identity of self as infertile.[27] enthood has been achieved or childlessness accepted, In considering the impact of infertility on women, infertility can, and often does, periodically reemerge Unruh and McGrath suggest that infertile women have only to be remourned from a different perspective or (1) the right to have control over their bodies, particu- vantage point in the couple’s or individual’s life. larly their reproductive capabilities, and to actively par- It has been suggested that infertility is a disenfran- ticipate in their healthcare; (2) been commonly blamed chised grief in that infertility is a loss that can lead for the conditions that have caused them personal dis- to intense grief, although others may not recognize it tress; (3) been socialized to value themselves primar- or perceive it as minor.[66] Disenfranchised grief has ily for their childbearing roles; and (4) more in com- three categories, all of which are to some extent often mon with each other than their differences in fertil- experienced by infertile couples. It is a grief in which ity.[65] Another theoretical approach that addresses (1) the lost relationship loss has no legitimacy, is socially identity issues in infertile women is Kikendall’s appli- unrecognized, or unacknowledged (e.g., yearned-for cation of self-discrepancy theory. According to this theo- child, miscarriage); (2) the loss itself is not recog- retical approach, infertility is a personal identity crisis nized as significant to others in the couple’s social net- in which a woman experiences a conflict between her work or culture (e.g., failed treatment cycle or chem- ideal sense of self as mother or woman and her real ical pregnancy); and (3) the griever is not recognized sense of self as infertile.[68] as having suffered a loss and justified in grieving. Dis- enfranchised grief is recognized as a more complicated Stress and Coping Theories bereavement because the usual supports that facilitate Taymor and Bresnick were the first to refer to infertil- grieving and the healing process are absent. Further- ity as a stressor and crisis involving interaction among more, there are some situations around which losses are physical conditions predisposing to infertility, medi- so socially stigmatizing that individuals are reluctant to cal interventions addressing infertility, reactions of oth- acknowledge their loss. Infertility may be so socially ers, and individual psychological characteristics.[69] unacceptable that the shame of the diagnosis, treat- Stanton and Dunkel-Schetter applied stress and cop- ments for it, and/or family-building alternatives may be ing theory to infertility, noting that infertility is char- lead the infertile individual to keep his or her losses acterized by the dimensions of what individuals find hidden to minimize social stigma. stressful: unpredictability, negativity, uncontrollability,