Publication
Parents with a child throughout the end-of-course: A qualitative study
Wu L · Pediatric Blood and Cancer · 2018
Background/Objectives: The purpose of the current study was to describe the lived experience of parents with a child with incurable cancer at the end of life (EOL). Design/Methods: A qualitative study was conducted following a phenomenological approach. Ten parents of children with incurable cancer were recruited from a medical center in southern Taiwan from May 2014 to June 2015. Data were collected through in-depth interviews and analyzed using Giorgi's four-step procedure. Results: Two major themes emerged: keep fighting and acceptance of death. Keep fighting was divided into three sub-themes: trying as hope, being alive as hope, and waiting for a miracle. Acceptance of death included four sub-themes: an end to suffering, living in the moment, discussion of death, and letting go. Love was the core value used for making decisions regardless of whether aggressive treatment or palliative care was chosen. Conclusions: Parents had difficulty adapting to a palliative care perspective due to a misconception that this meant giving up on their child. It is critical, however that parents move towards an acceptance of impending death. Religion and belief systems play a varied and important role in the lived experience of parents of a child with incurable cancer.
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