Facilitating the Genetic Counseling Process: A Practice Manual

318 Pages·2003·0.816 MB·English

by  Patricia McCarthy Veach, Bonnie S. LeRoy, Dianne M. Bartels (auth.)

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
[email protected] [email protected]
Dianne M. Bartels
Center for Bioethics
University of Minnesota
Suite 504 Boynton
410 Church Street, SE
Minneapolis, MN 55455, USA
[email protected]
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(cid:1)96042—dc21 2003042477
ISBN 0-387-00330-4 Printed on acid-free paper.
©2003 Springer-Verlag New York, Inc.
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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 research-
ers 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 ex-
amples 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, includ-
ing: 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 back-
grounds 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 is-
sues, we provide a number of written exercises and structured activities. The
exercises and activities are based on an active and cooperative learning ap-
proach that emphasizes a high level of student participation and student re-
sponsibility for learning (Johnson, Johnson, & Smith, 1991). Students work
together in learning activities that promote cooperation rather than competi-
tion. 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 ge-
netic 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, (cid:0)(cid:1)(cid:2)(cid:3)(cid:4)(cid:5)(cid:1)(cid:0)(cid:6)(cid:5)(cid:4)(cid:4)(cid:3)(cid:6)(cid:1)(cid:7)(cid:6)(cid:8)(cid:4)
(cid:9)(cid:10)(cid:2)(cid:1)(cid:11)(cid:7)(cid:5)(cid:4)(cid:3)(cid:6)(cid:1)(cid:7)(cid:6)(cid:0)(cid:4)(cid:12)(cid:4)(cid:9)(cid:1)(cid:6)(cid:7)(cid:5)(cid:12)(cid:13)(cid:6)(cid:1)(cid:14)(cid:7)(cid:0)(cid:4)(cid:6)(cid:11)(cid:0)(cid:0)(cid:2)(cid:4)(cid:0)(cid:6)(cid:1)(cid:14)(cid:4)(cid:13)(cid:6)(cid:10)(cid:15)(cid:4)(cid:6)(cid:9)(cid:7)(cid:16)(cid:17)(cid:7)(cid:15)(cid:1)(cid:10)(cid:8)(cid:12)(cid:4)(cid:6)(cid:3)(cid:11)(cid:0)(cid:9)(cid:12)(cid:7)(cid:0)(cid:11)(cid:5)(cid:18)(cid:6)(cid:1)(cid:7)
(cid:7)(cid:1)(cid:14)(cid:4)(cid:15)(cid:0)(cid:19)(cid:6)(cid:0)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: [email protected]; [email protected]; and
[email protected].
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 ex-
pertise from the perspectives of the genetic counseling program director, clini-
cal 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.......................................................................................................... v
Acknowledgments ....................................................................................... ix
Chapter 1 Guidelines for Manual Users: Instructors,
Supervisors, and Students................................................ 1
Chapter 2 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 Gathering Information: Asking Questions
and Taking Client Genetic History ................................... 73
Chapter 6 Structuring the Genetic Counseling Session:
Initiating, Contracting, Ending, and Referral................... 93
Chapter 7 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 Client Issues: Resistance, Client Affect,
and Client Styles............................................................... 174
Chapter 10 Counselor Self-Reference: Advice Giving,
Self-Disclosure, and Self-Involving Responses................. 197
xi
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xii 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 National Society of Genetic Counselors Code
of Ethics ........................................................................... 285
Appendix B American Board of Genetic Counseling
Practice-Based Competencies .......................................... 289
Index .......................................................................................... 293