Facilitating the Genetic Counseling Process

Facilitating the Genetic Counseling Process

Patricia McCarthy Veach Bonnie S. LeRoy Dianne M. Bartels Facilitating the Genetic Counseling Process A Practice Manual

Patricia McCarthy Veach Bonnie S. LeRoy Department of Educational Graduate Program in Genetic Psychology Counseling 139 Burton Hall University of Minnesota University of Minnesota 420 Delaware Street, SE, MMC 485 Minneapolis, MN 55455, USA Minneapolis, MN 55455, USA veach001@umn.edu leroy001@umn.edu Dianne M. Bartels Center for Bioethics University of Minnesota Suite 504 Boynton 410 Church Street, SE Minneapolis, MN 55455, USA barte001@umn.edu Library of Congress Cataloging-in-Publication Date McCarthy Veach, Patricia. Facilitating the genetic counseling process : a practice manual / Patricia McCarthy Veach Bonnie S. Leroy, Diane M. Bartels. p. cm. Includes bibliographical references and index ISBN 0-387-00330-4. (softcover : alk. paper) 1. Genetic Counseling Handbooks, manuals, etc. 1. Veach, Patricia McCarthy. II. Bartels, Dianne M. III. Title. RB155.7.L47 2003 362.1 96042 dc21 2003042477 ISBN 0-387-00330-4 Printed on acid-free paper. 2003 Springer-Verlag New York, Inc. All rights reserved. This work may not be translated or copied in whole or in part without the written permission of the publisher (Springer-Verlag New York, Inc., 175 Fifth Avenue, New York, NY 10010, USA), except for brief excerpts in connection with reviews or scholarly analysis. Use in connection with any form of information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed is forbidden. The use in this publication of trade names, trademarks, service marks, and similar terms, even if they are not identified as such, is not to be taken as an expression of opinion as to whether or not they are subject to proprietary rights. While the advice and information in this book are believed to be true and accurate at the date of going to press, neither the authors nor the editors nor the publisher can accept any legal responsibility for any errors or omissions that may be made. The publisher makes no warranty, express or implied, with respect to the material contained herein. Printed in the United States of America 9 8 7 6 5 4 3 2 1 SPIN 10906767 www.springer-ny.com Springer-Verlag New York Berlin Heidelberg A member of BertelsmannSpringer Science+Business Media GmbH

Preface Overview This manual is intended to help genetic counseling students develop basic helping skills that form the foundation of effective genetic counseling relationships. The chapters address several of the psychosocial, practice-based competencies established by the American Board of Genetic Counseling (1996) (see Appendix A for a list of the ABGC Clinical Competencies), including: Communication Skills (Chapters 2-7), Interpersonal Counseling and Psychosocial Assessment Skills (Chapters 8-10), AND professional Ethics and Values (Chapters 11 and 12). The content contained in this manual will not fully prepare students to practice independently. However, it will provide a skill base that deepens and broadens as students gain additional academic and clinical preparation. Although we designed this manual for use in a classroom setting, most of the materials, activities, and exercises can be adapted by clinical supervisors for use in the clinical setting. We drew upon a number of sources in writing this manual, including our combined professional experience as practitioners, educators, and researchers in the fields of mental health counseling, genetic counseling, psychosocial nursing, family social science, and bioethics, and from literature in the fields of psychology and genetic counseling. Many of the articles and books that we cite are from the mental health counseling/psychotherapy field. There are striking similarities between mental health counseling and genetic counseling, and many concepts are virtually interchangeable. However, our goal is not to train genetic counseling students to be psychotherapists. Therefore, the examples that we provide to illustrate skills, concepts, and processes are always specific to the genetic counseling relationship. The content is grounded in a variety of theoretical presentations, including: humanistic theories that stress the significance of helper genuineness, positive regard, respect, and nondirectiveness; psychodynamic theories that emphasize the strength and quality of the helper-client working alliance and conscious and unconscious processes; and cognitive-behavioral theories that describe the complex interaction of thoughts, feelings, and behaviors and the importance of defining client concerns and goals in concrete, behavioral terms. v

vi Preface Our perspective is strongly influenced by our white, Western cultural backgrounds and by the tenets of traditional Western medicine. We attempt to broaden this perspective by pointing out the limitations of certain concepts and techniques for clients whose cultural practices, beliefs, and worldviews differ from our own. In addition, we include some examples of clients with diverse backgrounds. It is important to keep in mind, however, that a few examples do not represent all cultural groups, nor do they apply to all of the members within a particular group. Manual Format and Philosophy We begin each chapter by stating general learning objectives. Then we define the skills, place them in a context (their function or purpose in genetic counseling), give examples, and provide activities and written exercises for skill practice. We conclude each chapter with a brief annotated bibliography to provide additional resources on major topics. The reader may notice some redundancy in the examples (e.g., many involve prenatal genetic counseling situations; and Down s syndrome, muscular dystrophy, and Huntington s disease are frequently mentioned). This redundancy is intentional because we wanted our examples to be basic enough that students at all levels, including those with limited knowledge about genetic conditions, would be able to understand the examples and participate in related activities. Because we believe that guided practice and critical reflection lead to skill improvement and to increased self-awareness of significant professional issues, we provide a number of written exercises and structured activities. The exercises and activities are based on an active and cooperative learning approach that emphasizes a high level of student participation and student responsibility for learning (Johnson, Johnson, & Smith, 1991). Students work together in learning activities that promote cooperation rather than competition. Furthermore, this approach facilitates student self-assessment of strengths and limitations. A great deal of research supports the superior outcomes that result from active, cooperative learning (Johnson et al., 1991). Moreover, reading and/or lectures alone are not sufficient for developing effective genetic counseling helping skills. Most of the written exercises can be modified to use as structured activities in the classroom or clinical setting. The structured activities can be done before the written exercises to stimulate student thinking, or after the written exercises to afford students the opportunity to think through how much they are comfortable learning. Regardless of which exercises and activities are chosen, and whether they are done in writing or orally, students need to be cautioned to select only those issues they are comfortable disclosing to others. Instructors/supervisors should reinforce this point and always inform students in advance about the types of information they will be expected to share with others.

Preface vii Closing Comments We ask that you begin with the chapter, Guidelines for Manual Users, as it sets the stage for the remaining chapters. We hope that you find this manual useful, and we welcome any comments or questions you might have about it. We can be contacted at: leroy001@umn.edu; veach001@umn.edu; and barte001@umn.edu. Patricia McCarthy Veach Bonnie S. LeRoy Dianne M. Bartels

Acknowledgments Preparation of this manual was supported by a grant from the Jane Engelberg Memorial Fellowship. We were fortunate to have the input of the following individuals who served as advisory board members to our project: Diane Baker, Elisabeth Gettig, Caroline Lieber, Janice Edwards, Bonnie Hatten, Catherine Wicklund, Jane Schuette, Nicole Teed, Rob Finch, Annette Patterson, Mary Ann Whalen, Joyce Weinsheimer, and Vivian Ota-Wang. These individuals contributed their expertise from the perspectives of the genetic counseling program director, clinical supervisor, advanced genetic counseling student, education specialist, and cross-cultural counselor. They provided critical comments on chapter drafts and shared a number of excellent, practice-based examples that we included in the manual. We would also like to acknowledge the assistance of the following individuals in the development of this manual: Matthew Bower, Matthew Hanson, Rafael Robert, and Pam Folkens. ix

Contents Preface... Acknowledgments... v ix Chapter 1 Chapter 2 Guidelines for Manual Users: Instructors, Supervisors, and Students... 1 Overview of Genetic Counseling: History of the Profession and Methods of Practice... 23 Chapter 3 Listening to Clients: Attending Skills... 38 Chapter 4 Listening to Clients: Primary Empathy Skills... 51 Chapter 5 Chapter 6 Chapter 7 Gathering Information: Asking Questions and Taking Client Genetic History... 73 Structuring the Genetic Counseling Session: Initiating, Contracting, Ending, and Referral... 93 Collaborating with Clients: Providing Information and Assisting in Client Decision Making... 122 Chapter 8 Responding to Client Cues: Advanced Empathy... and Confrontation... 150 Chapter 9 Chapter 10 Client Issues: Resistance, Client Affect, and Client Styles... 174 Counselor Self-Reference: Advice Giving, Self-Disclosure, and Self-Involving Responses... 197 xi

xii Patricia McCarthy Veach Contents Chapter 11 Behaving Ethically... 222 Chapter 12 Recognizing Your Limits: Transference, Countertransference, Stress, and Burnout... 242 Chapter 13 Using Internet Resources... 262 References... 276 Appendix A Appendix B National Society of Genetic Counselors Code of Ethics... 285 American Board of Genetic Counseling Practice-Based Competencies... 289 Index... 293