OBJECTIVE: In pediatric oncology, parents want, and are expected, to act and decide in the best interest of their child. A recent qualitative study (PRESENCE study) indicated that parents had difficulty in doing so. The aim of this subanalysis was to describe and offer an explanation for the parents' actions in expressing and handling of "the voice of the child." METHOD: A multicenter, qualitative research study comprising 37 interviews conducted with 34 parents of 17 children with incurable cancer, cared for at home, during the palliative phase. A thematic analysis was conducted. RESULTS: The "voice of the child" becomes manifest in the parents' expressions of the child's needs and perceptions. Parents who actively searched to understand their child's inner perspective used direct and indirect strategies. Parents preferred indirect strategies when their child avoided talking or when they considered the conversation as threatening for the child, or for themselves. Even if the parents show an intense involvement in the care and support of their child; they can still have difficulty acknowledging the child's perspective. An inability to take into account the child's perspective was largely due to the parents' own struggle to cope with loss. CONCLUSIONS: Whether or not the voice of children approaching the end-of- life is heard, often depends on their parents' ability to give them a voice. Professional caregivers have a difficult task in supporting parents in giving their child his or her voice, while at the same time preserving their, and their parents', ability to cope. (c) 2015 APA, all rights reserved).
OBJECTIVE: In pediatric oncology, parents want, and are expected, to act and decide in the best interest of their child. A recent qualitative study (PRESENCE study) indicated that parents had difficulty in doing so. The aim of this subanalysis was to describe and offer an explanation for the parents' actions in expressing and handling of "the voice of the child." METHOD: A multicenter, qualitative research study comprising 37 interviews conducted with 34 parents of 17 children with incurable cancer, cared for at home, during the palliative phase. A thematic analysis was conducted. RESULTS: The "voice of the child" becomes manifest in the parents' expressions of the child's needs and perceptions. Parents who actively searched to understand their child's inner perspective used direct and indirect strategies. Parents preferred indirect strategies when their child avoided talking or when they considered the conversation as threatening for the child, or for themselves. Even if the parents show an intense involvement in the care and support of their child; they can still have difficulty acknowledging the child's perspective. An inability to take into account the child's perspective was largely due to the parents' own struggle to cope with loss. CONCLUSIONS: Whether or not the voice of children approaching the end-of- life is heard, often depends on their parents' ability to give them a voice. Professional caregivers have a difficult task in supporting parents in giving their child his or her voice, while at the same time preserving their, and their parents', ability to cope. (c) 2015 APA, all rights reserved).
Authors: Michael Rost; Tenzin Wangmo; Felix Niggli; Karin Hartmann; Heinz Hengartner; Marc Ansari; Pierluigi Brazzola; Johannes Rischewski; Maja Beck-Popovic; Thomas Kühne; Bernice S Elger Journal: J Bioeth Inq Date: 2017-10-11 Impact factor: 1.352
Authors: Sarah Mitchell; Karina Bennett; Andrew Morris; Anne-Marie Slowther; Jane Coad; Jeremy Dale Journal: Palliat Med Date: 2019-08-21 Impact factor: 4.762
Authors: Merel M Nap-van der Vlist; Emma E Berkelbach van der Sprenkel; Linde N Nijhof; Martha A Grootenhuis; Cornelis K van der Ent; Joost F Swart; Annet van Royen-Kerkhof; Martine van Grotel; Elise M van de Putte; Sanne L Nijhof; Marijke C Kars Journal: BMJ Paediatr Open Date: 2021-05-18
Authors: Jurrianne C Fahner; Judith A C Rietjens; Agnes van der Heide; Johannes J M van Delden; Marijke C Kars Journal: Acta Paediatr Date: 2019-11-20 Impact factor: 2.299