Hjem

Introduction 1 SECTION A: SETTING THE STAGE: ATTUNING MORAL AND ETHICAL THINKING 1 A parent''s perspective on everyday ethics 7 Jennifer Johannesen 2 Present-day health and neurodevelopmental disability 17 Peter L. Rosenbaum and Gabriel M. Ronen with contributions by Barbara J. Cunningham 6 The importance of beliefs and relationships in the decision-making process 75 Howard Needelman and David Sweeney 7 Humanism in the practice of neurodevelopmental disability: examples of challenges and opportunities 85 Garey Noritz 8 Truth with hope: ethical challenges in disclosing ''bad'' diagnostic, prognostic and intervention information 97 Iona Novak, Marelle Thornton, Cathy Morgan, Petra Karlsson, Hayley Smithers-Sheedy and Nadia Badawi SECTION C: ETHICAL ISSUES IN ADDRESSING FAMILIES'' PRIORITIES 9 Different perspectives, different priorities: using a strengths-based approach to gain trust and find common ground 111 Dinah S. Reddihough and Jane Tracy 3 Can moral problems of everyday clinical practice ever be resolved? A proposal for integrative pragmatist approaches 33 Eric Racine SECTION B: EARLY DAYS, THE START OF THE DIFFERENT DEVELOPMENTAL JOURNEY 4 Prenatal consultation: ethical challenges and proposed solutions 49 Jennifer Cobelli Kett, Hannah M. Tully and Dan Doherty 5 Evidence-based neonatal neurology: decision-making in conditions of medical uncertainty 61 Isabelle Chouinard, Eric Racine and Pia Wintermark 10 The importance of patients'' and families'' narratives: developing a philosophy of care to support patient/family goals 123 Jean C. Kunz Stansbury and Scott Schwantes SECTION D: RESPECTING SOCIAL AND CULTURAL VALUES 14 Terminology in neurodevelopmental disability: is using stigmatizing language harmful? 161 Lisa Samson-Fang 15 Everyday ethics in Rwanda: perspectives on hope, fatigue, death and regrowth 169 Emily Esmaili and Christian Ntizimira 16 When expectations diverge: addressing our cultural differences differently 177 Laura S. Funkhouser with contributions by Suzanne Linett 17 Service provision for hard-to-reach families: what are our responsibilities? 193 Michelle Phoenix 18 The obligation to report child abuse/neglect is more complex than it seems 203 Lucyna M. Lach and Rachel Birnbaum 11 The ethics of patient advocacy: bending the rules on behalf of patients 133 Raymond Tervo and Paul J. Wojda 12 Responding to requests for novel/unproven alternative and complementary treatments 143 Edward A. Hurvitz and Garey Noritz 13 A miracle cure for neurological disability: balancing hype and hope for parents and patients in the absence of evidence-based recommendations 153 Paul C. Mann, Russell P. Saneto and Sidney M. Gospe Jr. 19 The dilemmas for siblings of children with disabilities: personal reflections on ethical challenges 215Peter Blasco 20 Paying attention to parental mental health: is this our responsibility? 223 Dinah S. Reddihough and Elise Davis SECTION E: THERAPIES, REHABILITATION AND INTERVENTIONS 21 Tensions regarding the processes associated with decision-making about intervention 233 Lora Woo, Eunice Shen and Elizabeth Russel 22 Can''t you just do therapy? When there is disagreement about discharge from therapy 249 Janey McGeary Farber and Harriet Fain-Tvedt 23 Concurrent therapy in pediatric neurorehabilitation 259 Marilyn Wright, Sandra Gaik and Kathleen Dekker 24 Ethical considerations regarding surgical treatment of severe scoliosis in children with cerebral palsy 271 M. Wade Shrader SECTION F: ETHICAL ISSUES IN SPECIFIC CONDITIONS AND CONTEXTS 25 Considering best interest, quality of life, autonomy and personhood in the intensive care unit 279 Michael A. Clarke 26 How much is too much care? Interventions and life support in children with profound impairments and life-threatening conditions 291 Christopher J. Newman and Eric B. Zurbrugg 27 Discussing sudden unexpected death in newly diagnosed epilepsy 303 James J. Reese Jr. and Phillip L. Pearl 28 Ethical challenges of diagnosing fetal alcohol spectrum disorder: when diagnosis has sociopolitical consequences 311 Ilona Autti-Rämö SECTION G: EMERGING INDEPENDENCE AND PREPARING FOR ADULTHOOD 29 Growth and pubertal manipulation in children with neurodisabilities: what are the ethical implications? 323 M. Constantine Samaan 30 Independence in adulthood: ethical challenges in providing transitional care for young people with neurodevelopmental impairments 335 Jan Willem Gorter and Barbara E. Gibson 31 Conservatorship in emerging adults: ethical and legal considerations 349 Henry G. Chambers Epilogue: Looking back to the future 353 Bernard Dan