Genetic Counseling Practice

Preface x About the Authors xi Acknowledgments xvii 1 Introduction 1 Bonnie S. LeRoy, Patricia McCarthy Veach, and Nancy P. Callanan Development of the 2nd Edition 2 References 7 2 Complicated Shadows: The Limitations of Autonomy in Genetic Counseling Practice 9 Robert G. Resta Objectives 9 Definition and Focus 10 Seven Limitations of Autonomy 11 Summary 18 Learning Activities 19 References 21 3 Actively Engaging with Patients in Decision-Making 25 Andrea Shugar and Cheryl Shuman Objectives 25 A Brief History of the Medical Encounter: From Paternalism to Shared Decision-Making 25 Psychological Aspects of Decision-Making 26 Informed Decision-Making 30 Summary 41 Learning Activities 41 Acknowledgment 48 References 48 4 Risk Assessment and Communication: A Complex Process 53 Shannan Delany Dixon, MaryAnn W. Campion, and Claire N. Singletary Objectives 53 Introduction 53 Risk Assessment in Genetic Counseling 54 Risk Communication 61 Influences on Risk Perception 65 Summary 70 Learning Activities 70 References 73 5 A Genetic Counselor’s Guide to Understanding Grief 79 Nadia Ali and Cecelia Bellcross Objectives 79 Introduction 80 The Grief Process 82 Types of Grief 89 Conclusion 101 Learning Activities 102 References 105 6 Patient Anger: Insights and Strategies 109 Lynn Schema Objectives 109 Introduction 109 Challenges Posed by Patient Anger 116 Practice Applications 118 Conclusion 123 Summary Points 123 Learning Activities 124 References 127 7 Resistance and Adherence: Understanding the Patient’s Perspective 131 Krista Redlinger-Grosse Objectives 131 Definition and Concepts 132 Resistance 133 Adherence and Non-adherence 140 Summary 144 Learning Activities 145 References 148 8 Countertransference: Making the Unconscious Conscious 153 Krista Redlinger-Grosse Objectives 153 Definitions and Concepts 154 The Countertransference Process 155 Manifestations and Effects of Countertransference 161 Management of Countertransference 166 Summary 169 Learning Activities 169 References 171 9 Supporting Family Communication About Genetic Conditions 177 Marion Mcallister, Rhona Macleod, and Alison Metcalfe Objectives 177 Introduction 177 Literature Review 178 Application of Select Family Systems Theory Interventions Adapted to Genetic Counseling 180 Summary 186 Learning Activities 187 Acknowledgments 188 References 188 10 Developmentally Based Approaches for Counseling Children and Adolescents 191 Stephanie Austin and Kelly Schoch Objectives 191 Introduction 191 Child and Adolescent Development 192 Theoretical Framework 195 Chronic Illness and Children 197 Strategies for Genetic Counseling with Children and Adolescents 199 Conclusion 212 Summary Points 212 Learning Activities 212 References 214 11 Cultural Competency and Genetic Counseling: Key Concepts 219 Nancy Steinberg Warren Objectives 219 Introduction 219 Definitions and Key Concepts 220 Health Disparities 226 Conceptualizing Cultural Competence 230 Developing Cultural Competency 231 Summary 236 Learning Activities 236 Resources for Cultural Knowledge, Cases, Teaching, and Learning Exercises 239 References 240 12 Cultural Competency: Application to Genetic Counseling 247 Nancy Steinberg Warren Objectives 247 Introduction 247 Cultural Competency and the Genetic Counseling Process 248 Explanatory Models of Health and Well-being 253 Health Literacy 259 Working with Interpreters and Translators 260 Summary 263 Learning Activities 264 Resources for Cultural Knowledge, Cases, Teaching, and Learning Exercises 265 References 266 13 Education in Genetic Counseling: The Impacts of Genetic Literacy and Adult Learning 271 Andrea L. Durst and Rachel Mills Objectives 271 Introduction 271 General Literacy in the United States 273 Health Literacy 274 Genetic Literacy 276 Genetic Literacy Considerations for Genetic Counselors 280 Adult Education Theory in Practice 294 Summary Points 301 Learning Activities 302 References 304 14 Adapting Genetic Counseling Practice to Different Models of Service Delivery 317 Angela Trepanier and Dawn C. Allain Objectives 317 Introduction 317 Defining Service Delivery Models 318 Attributes of Alternative Service Delivery Models 319 Putting it all Together – Practice Implications 329 Conclusions 333 Learning Activities 333 References 335 15 “Oh The Places You’ll Go!” The Genetic Counselor Professional Development Journey 341 Catherine A. Reiser Objectives 341 Introduction 341 Literature Review 343 Reflective Practice 347 Optimizing Self-Reflection 352 Leadership 354 Summary Points 356 Acknowledgments 356 Learning Activities 357 References 360 16 Development of the Genetic Counseling Profession: A Professionalization Process 365 Bonnie Jeanne Baty Objectives 365 What Makes a Field of Practice a Profession? 365 How Does Genetic Counseling Measure Up to the Characteristics of a Profession? 366 Milestones in the Development of the Genetic Counseling Profession 366 Genetic Counseling and the General Model of Professionalization 369 Looking to the Future: Milestones that Need Further Development to Advance the Professionalization of Genetic Counseling 370 How is Professionalization of Genetic Counseling Relevant to Genetic Counseling Practitioners? 375 Summary 376 Learning Activities 377 References 378 Index 383