Ivana M M van der Geest1, Marry M van den Heuvel-Eibrink2, Liesbeth M van Vliet3, Saskia M F Pluijm4, Isabelle C Streng4, Erna M C Michiels4, Rob Pieters2, Anne-Sophie E Darlington5. 1. Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands; Department of Pediatric Oncology/Hematology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands. 2. Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands. 3. Department of Palliative Care, Policy, and Rehabilitation, Cicely Saunders Institute, King's College London, London, United Kingdom. 4. Department of Pediatric Oncology/Hematology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands. 5. University of Southampton, Faculty of Health Sciences, Southampton, United Kingdom. Electronic address: a.darlington@soton.ac.uk.
Abstract
OBJECTIVE: To investigate the rationale and consequences associated with a parent's decision to discuss death with a child with incurable cancer. STUDY DESIGN: We present data from a larger retrospective study involving bereaved parents of a child who died of cancer. Parents were asked whether they had discussed the impending death with their child, whether they reflected on this discussion positively, their reasons for not discussing death with their child, and the manner in which the conversation regarding death occurred. The data were analyzed qualitatively using a framework approach. RESULTS: Of the 86 parents of 56 children who answered the questions regarding discussing death with their child, 55 parents of 35 children did not discuss the impending death with their child. The following themes were identified: the parents' inability to discuss the impending death; the parents' desire to protect their child; views regarding talking with children; parents' views of child characteristics; the child's unwillingness to discuss the subject; lack of opportunity to talk; and the child's disability. The parents who did discuss death with their child generally used symbolic and/or religious narratives, or they had brief, direct conversations regarding death. The majority of parents felt positive regarding their decision about whether to talk with their child about his/her impending death. CONCLUSION: Most parents in this study cited several reasons for not discussing death with their child. Our findings highlight the sensitive and complex issues surrounding these conversations, indicating that there may be a role for clinicians in supporting parents.
OBJECTIVE: To investigate the rationale and consequences associated with a parent's decision to discuss death with a child with incurable cancer. STUDY DESIGN: We present data from a larger retrospective study involving bereaved parents of a child who died of cancer. Parents were asked whether they had discussed the impending death with their child, whether they reflected on this discussion positively, their reasons for not discussing death with their child, and the manner in which the conversation regarding death occurred. The data were analyzed qualitatively using a framework approach. RESULTS: Of the 86 parents of 56 children who answered the questions regarding discussing death with their child, 55 parents of 35 children did not discuss the impending death with their child. The following themes were identified: the parents' inability to discuss the impending death; the parents' desire to protect their child; views regarding talking with children; parents' views of child characteristics; the child's unwillingness to discuss the subject; lack of opportunity to talk; and the child's disability. The parents who did discuss death with their child generally used symbolic and/or religious narratives, or they had brief, direct conversations regarding death. The majority of parents felt positive regarding their decision about whether to talk with their child about his/her impending death. CONCLUSION: Most parents in this study cited several reasons for not discussing death with their child. Our findings highlight the sensitive and complex issues surrounding these conversations, indicating that there may be a role for clinicians in supporting parents.
Authors: Ivana Mm van der Geest; Patrick Je Bindels; Saskia Mf Pluijm; Erna Mc Michiels; Agnes van der Heide; Rob Pieters; Anne-Sophie E Darlington; Marry M van den Heuvel-Eibrink Journal: Br J Gen Pract Date: 2016-12 Impact factor: 5.386
Authors: Julia Gray Farber; Mary G Prieur; Christine Roach; Rosemary Shay; Michelle Walter; Drucy Borowitz; Elisabeth P Dellon Journal: Pediatr Pulmonol Date: 2018-03-12