In his critique of the telling versus not telling debates, Clemente argues that communication should be adjusted to the children's own needs, and that children''s
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"...opens up broader margins of reflection about how medical diagnoses, and in general medical communication, are delivered and negotiated and provides the reader with extensive references with which the theoretical discussion is constantly confronted and challenged...Clemente is surely paving the way toward a more fertile and effective collaboration between medical and linguistic anthropology..." - Letizia Bonanno, AAA Book Forum, 2016
Table of Contents
Series Preface ix Acknowledgments xii
Preface xiv
1. Children: Contributions to Communication and Illness 1
Alternatives to Speaking 5
Disclosure as a Dynamic and Heterogeneous Process 7
Disclosure to Children with Cancer 10
Problematizing Participation 13
Uncertainty and the Practice of Optimism 21
Multiple Uncertainties 21
Hierarchically Organized Uncertainties 23
Variable Uncertainties 23
Practicing Hope and Optimism 25
Ethnography and Conversation Analysis 26
Plan of the Book 31
2. A Linguistic Anthropologist in a Pediatric Cancer Unit 33
Culture and Disclosure Practices in Catalonia 34
Fieldwork with Children 38
Contexts of Children’s Questions 42
Investigating Avoidance 44
Multiple Ways of Talking about Cancer 47
3. Living and Dealing with Cancer 49
Focusing on Treatment 51
Guessing 55
Estar baixet (Having Low Blood Cell Counts) 56
Les llagues (Mouth Sores) 57
La febre (Fever and Infections) 58
Being Together 60
Acompanyar (Being at the Patient’s Side) 61
Menjar (Eating) 63
Fer una visita (Visiting) 64
Talking Privately 67
Uncertainties of Treatment 71
4. Co]constructing Uncertainty 74
Questions and Answers 76
Uncertainty and the Topic of Questions 79
Contingent Answers 80
Contingent Questions 86
Uncertainty and the Action of Questions 88
Answers that Lead to Subsequent Actions 90
Avoiding Answers and Avoiding Silence 93
Stepping into the Uncertain Future One Turn at a Time 100
5. Engaging in Communication at Catalonia Hospital 102
Learning the Diagnosis 103
L’entrevista (The Treatment Interview) 109
“And When Will I Be Completely Cured?” 111
Six Communication Strategies 127
6. Patient Pressure and Medical Authority 129
Everyday Life in Treatment 130
“How Many Chemos Do I Have Left?” 133
Seeking Answers Without Challenging Medical Authority 151
7. The Limits of Optimism at the End of Treatment 153
Remission 154
Relapse 159
Negotiating Death 161
“Is the Day of the Autotransplant Going to Be Delayed?” 168
Optimistic Collusion 178
8. Conclusion 180
Appendix A: Profiles of Patients 189
Children (ages 3-6) 189
Young people (ages 11-18) 190
Appendix B: Transcription Conventions 193
References 197
Index 214
