Bereaved Parents' Perspective on Communication of Transition to Palliative Care in Pediatric Oncology - Hungarian Experience

Bereaved Parents' Perspective on Communication of Transition to Palliative Care in Pediatric Oncology - Hungarian Experience

Foldesi E; Zorgo S; Nyiro J; Hegedus K; Hauser P

Pediatric Blood and Cancer

2022

Bereavement; Child; childhood cancer; clinical article; communication protocol; conference abstract; consultation; Female; genetic transcription; Human; Hungary; Male; nonverbal communication; Palliative Therapy; semi structured interview; Terminal Care

Background and Aims: Transition to palliative care (PC) is a critical aspect of pediatric oncology requiring a high level of communication skills from doctors, which could be best judged by parents of children died in cancer. Our aim was to explore parents' perspectives regarding the timing of the consultation on implementing PC, as well as facets of verbal and non-verbal communication in Hungary. Method(s): Semi-structured interviews were conducted with parents who had lost their child to cancer within the past 1-5 years. Interview transcripts (n=23) were scrutinized with Interpretative Phenomenological Analysis. Result(s): Parents frequently associated palliation with end-of-life care and clearly delimited the transition to PC after curative treatments had been exhausted. Parents were ambivalent regarding using the word "death" during this consultation and often did not receive information on what to expect (e.g., regarding symptoms) and who to turn to for further information or support (e.g., concerning bereavement). Conclusion(s): Although significant progress could be observed in the organization of pediatric palliative care in Hungary, there is still no widely accepted communication method for communication of transition to sole PC. There is a need for a culturally-sensitive approach to refining recommendations on word-use and communication protocol in pediatric PC also in Hungary.

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March List 2023