Myra Bluebond-Langner1,2, Nicolas Hall1, Katherine Vincent1, Ellen M Henderson1, Jessica Russell1, Emma Beecham1,3, Gemma Bryan1, Jennifer E Gains4,5, Mark N Gaze4,5, Olga Slater5, Richard W Langner1, Darren Hargrave5,6. 1. Louis Dundas Centre for Children's Palliative Care, University College London Great Ormond Street Institute of Child Health, London, UK. 2. Department of Sociology, Anthropology and Criminal Justice, Rutgers University, Camden, New Jersey. 3. Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK. 4. Department of Oncology, University College London Hospitals NHS Foundation Trust, London, UK. 5. Department of Paediatric Oncology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK. 6. Developmental Biology and Cancer Research and Teaching Department, University College London Great Ormond Street Institute of Child Health, London, UK.
Abstract
BACKGROUND: Previous studies have found that parents of children with cancer desire more prognostic information than is often given even when prognosis is poor. We explored in audio-recorded consultations the kinds of information they seek. METHODS: Ethnographic study including observation and audio recording of consultations at diagnosis. Consultations were transcribed and analyzed using an interactionist perspective including tools drawn from conversation and discourse analysis. RESULTS: Enrolled 21 parents and 12 clinicians in 13 cases of children diagnosed with a high-risk brain tumor (HRBT) over 20 months at a tertiary pediatric oncology center. Clinicians presented prognostic information in all cases. Through their questions, parents revealed what further information they desired. Clinicians made clear that no one could be absolutely certain what the future held for an individual child. Explicit communication about prognosis did not satisfy parents' desire for information about their own child. Parents tried to personalize prognostic information and to apply it to their own situation. Parents moved beyond prognostic information presented and drew conclusions, which could change over time. Parents who were present in the same consultations could form different views of their child's prognosis. CONCLUSION: Population level prognostic information left parents uncertain about their child's future. The need parents revealed was not for more such information but rather how to use the information given and how to apply it to their child in the face of such uncertainty. Further research is needed on how best to help parents deal with uncertainty and make prognostic information actionable.
BACKGROUND: Previous studies have found that parents of children with cancer desire more prognostic information than is often given even when prognosis is poor. We explored in audio-recorded consultations the kinds of information they seek. METHODS: Ethnographic study including observation and audio recording of consultations at diagnosis. Consultations were transcribed and analyzed using an interactionist perspective including tools drawn from conversation and discourse analysis. RESULTS: Enrolled 21 parents and 12 clinicians in 13 cases of children diagnosed with a high-risk brain tumor (HRBT) over 20 months at a tertiary pediatric oncology center. Clinicians presented prognostic information in all cases. Through their questions, parents revealed what further information they desired. Clinicians made clear that no one could be absolutely certain what the future held for an individual child. Explicit communication about prognosis did not satisfy parents' desire for information about their own child. Parents tried to personalize prognostic information and to apply it to their own situation. Parents moved beyond prognostic information presented and drew conclusions, which could change over time. Parents who were present in the same consultations could form different views of their child's prognosis. CONCLUSION: Population level prognostic information left parents uncertain about their child's future. The need parents revealed was not for more such information but rather how to use the information given and how to apply it to their child in the face of such uncertainty. Further research is needed on how best to help parents deal with uncertainty and make prognostic information actionable.
Authors: Enikő Földesi; Szilvia Zörgő; Judit Nyirő; György Péter; Gábor Ottóffy; Peter Hauser; Katalin Hegedűs Journal: Children (Basel) Date: 2022-05-02