Child and Adolescent Resilience Within Medical Contexts

Child and Adolescent Resilience Within Medical Contexts Carey DeMichelis • Michel Ferrari Editors Child and Adolescent Resilience Within Medical Contexts Integrating Research and Practice Editors Carey DeMichelis Department of Applied Psychology and Human Development Joint Center for Bioethics University of Toronto Toronto, ON, Canada Michel Ferrari Department of Applied Psychology and Human Development University of Toronto, OISE Toronto, ON, Canada ISBN 978-3-319-32221-6 ISBN 978-3-319-32223-0 DOI 10.1007/978-3-319-32223-0 (eBook) Library of Congress Control Number: 2016943324 © Springer International Publishing Switzerland 2016 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. Printed on acid-free paper This Springer imprint is published by Springer Nature The registered company is Springer International Publishing AG Switzerland Acknowledgements The editors of this volume would like to offer their heartfelt thanks to the authors represented here who each agreed to contribute to this somewhat unusual project. Their willingness to begin an interdisciplinary dialogue has lent richness and depth to the volume. We would also like to thank the department of Applied Psychology and Human Development at the University of Toronto for funding a year of graduate work on this project. Thanks also go to the editorial team at Springer Publishing, particularly Sujitha Logaganesan for her patience and persistence. The editors also wish to offer their personal thanks to a number of important individuals. Carey would like to thank her family for their inexhaustible encouragement and her partner Simon for being, quite simply, the best. Michel would like to thank his family, Chandi and Mahé, for their constant love and support. v Contents 1 Relational Resilience: An Interdisciplinary Perspective ..................... Carey DeMichelis Part I 2 3 4 5 The Individual in Context Psychosocial Factors That Influence Children with Immune-Related Health Conditions ............................................. Julie M. Turner-Cobb and Tara J. Cheetham Resilience, Disparity, and Narrative Phenomenology: African American Families Raising Medically Vulnerable Children................................................................................ Cheryl Mattingly Promoting Resilience During the Transition to Adolescence in Chronically Ill Children and Their Families.................................... Jaclyn M. Lennon, Alexandra M. Psihogios, Caitlin B. Murray, Christina E. Holbein, and Grayson N. Holmbeck Resilience in Pediatric Sickle Cell Disease and Cancer: Social Ecology Indicators of Health-Related Quality of Life .............. Katherine S. Salamon, Lisa A. Schwartz, and Lamia P. Barakat Part II 1 13 37 51 77 The Social Space of Illness 6 The Role of Parents in Promoting Children’s Adjustment to Chronic Illness .................................................................................... 105 Jessica Hoehn, Emily Foxen-Craft, Wendy Pinder, and Lynnda M. Dahlquist 7 Resilience in the Care of Children with Palliative Care Needs ........... 121 Richard D. Goldstein vii viii Contents 8 Resilience and Pediatric Cancer Survivorship in Cultural Context ................................................................................. 131 Jaehee Yi, Min Ah Kim, and Jesmin Akter Part III Interventions, Therapies, and Techniques 9 Promoting Resilience in Paediatric Health Care: The Role of the Child Life Specialist ..................................................... 153 Cathy Humphreys and Chantal K. LeBlanc 10 Imaginal Coping: Resilience Through a Play of Tropes ...................... 175 Cindy Dell Clark 11 Acceptance and Commitment Therapy (ACT) to Foster Resilience in Pediatric Chronic Illness .................................................. 193 Michelle M. Ernst and Michael W. Mellon Part IV Social Structure and Policy Formation 12 Creating a Context for Resilience in Medical Settings: The Role of Collaborative Professionals and Informal Supports ................................................................................... 211 Michael Ungar 13 Building Strengths and Resilience: Supporting Families and Disabled Children ............................................................................ 227 Robyn Munford 14 The Concept of Resilience in Children’s Health and Social Care Policy ............................................................................ 247 Jane Noyes Part V Where We Have Been, Where We Are Going 15 Coping with Chronic Illness in Children and Their Families ............. 267 Ronald T. Brown and Mary Jo Kupst 16 Researching Resilience in a Medical Context: Understanding Social Ecologies Using Mixed Methods ................................................. 293 Linda Liebenberg 17 A Global Perspective on Resilience and Creativity .............................. 309 Bandy X. Lee and Grace Lee 18 Recommendations for Promoting Resilience of Children in Medical Contexts ................................................................................ 321 Michel Ferrari Index ................................................................................................................. 339 Contributors Jesmin Akter College of Social Work, University of Utah, Salt Lake City, UT, USA Lamia P. Barakat The Children’s Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA Ronald T. Brown Department of Psychology, University of North Texas at Dallas, Dallas, TX, USA Tara J. Cheetham Department of Psychology, University of Bath, Bath, UK Cindy Dell Clark Department of Anthropology, Rutgers University, New Brunswick, NJ, USA Lynnda M. Dahlquist Department of Psychology, University of Maryland, Baltimore County, MD, USA Carey DeMichelis Department of Applied Psychology and Human Development, Joint Centre for Bioethics, University of Toronto, Toronto, ON, Canada Michelle M. Ernst Department of Pediatrics, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA Michel Ferrari Department of Applied Psychology and Human Development, University of Toronto, OISE, Toronto, ON, Canada Emily Foxen-Craft Department of Psychology, University of Maryland, Baltimore County, MD, USA Richard D. Goldstein Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA Jessica Hoehn Department of Psychology, University of Maryland, Baltimore County, MD, USA Christina E. Holbein Department of Psychology, Loyola University, Chicago, IL, USA ix x Contributors Grayson N. Holmbeck Department of Psychology, Loyola University Chicago, Chicago, IL, USA Cathy Humphreys McMaster University, Hamilton, ON, Canada Min Ah Kim Department of Social Welfare, Myongji University, Seoul, South Korea Mary Jo Kupst Department of Psychology, Medical College of Wisconsin, Milwaukee, WI, USA Chantal K. LeBlanc IWK Health Center, Halifax, NS, Canada Bandy X. Lee Law and Psychiatry Division, Yale University, New Haven, CT, USA Center for the Study of Violence, Ames, IA, USA World Health Organization, Geneva, Switzerland Grace Lee Education Studies Program, Yale University, New Haven, CT, USA Jaclyn M. Lennon Department of Psychology, Loyola University, Chicago, IL, USA Linda Liebenberg Faculty of Graduate Studies, Dalhousie University, Halifax, NS, Canada Cheryl Mattingly Department of Anthropology, Division of Occupational Science and Therapy, University of Southern California, Los Angeles, CA, USA Michael W. Mellon Department of Pediatrics, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA Robyn Munford School of Social Work, Massey University, Palmerston North, New Zealand Caitlin B. Murray Department of Psychology, Loyola University, Chicago, IL, USA Jane Noyes School of Social Sciences, Bangor University, Gwynedd, UK Wendy Pinder Department of Psychology, University of Maryland, Baltimore County, MD, USA Alexandra M. Psihogios Department of Psychology, Loyola University, Chicago, IL, USA Katherine S. Salamon Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE, USA Lisa A. Schwartz The Children’s Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA Julie M. Turner-Cobb Department of Psychology, Bournemouth University, Poole, Dorset, UK Michael Ungar School of Social Work, Resilience Research Centre, Dalhousie University, Halifax, NS, Canada Jaehee Yi College of Social Work, University of Utah, Salt Lake City, UT, USA About the Editors Carey DeMichelis Is a doctoral candidate in the Department of Applied Psychology and Human Development at the University of Toronto. Her research focuses on the way adolescent patients make medical decisions—particularly in cases where the family’s cultural or religious beliefs conflict with medical recommendations. Drawing from biomedical ethics, developmental psychology, and medical anthropology, Carey’s research explores the way adolescent autonomy intersects with medical authority, cultural identity, and legal precedent in these complex cases. Carey is a member of the Collaborative Program at the Joint Centre for Bioethics. She is a graduate associate at the Centre for Ethics and at the Centre for Critical Qualitative Health Research at the University of Toronto. Michel Ferrari, Ph.D., Teaches developmental and educational psychology in the Department of Applied Psychology and Human Development at the Ontario Institute for Studies in Education (OISE), part of the University of Toronto. From 2004 to 2005, he was a visiting scholar at Harvard and at the Max Planck Institute for the History of Science and in 2013 was a visiting scholar at the University of Potsdam. He is interested in personal identity and developing wisdom throughout the life span and has studied self-understanding of identity in people diagnosed with autism. Dr. Ferrari has coauthored and coedited books on wisdom, including Teaching for Wisdom: Cross-cultural Perspectives on Fostering Wisdom (with Georges Potworowski, Amsterdam: Springer, 2008) and The Scientific Study of Personal Wisdom: From Contemplative Traditions to Neuroscience (with Nic Weststrate, Springer, 2014). Dr. Ferrari has also coedited books on child development and education, most recently, Developmental Relations among Mind, Brain, and Education: Essays in honor of Robbie Case (with Ljiljana Vuletic, Amsterdam: Springer, 2010) and Handbook of Resilience in Children of War (with Chandi Fernando, Springer, 2013). xi