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• W2086948678 abstract "IntroductionAlthough much is asked clinically and emotionally of children and adolescents who are receiving treatment for a life-threatening illness, they are not routinely asked how they experience the treatment that is intended to save or prolong their lives. Without their subjective reports (the ‘child's voice’), the treatment risk/benefit ratio cannot be fully known. Our purpose is to offer a description of the term ‘child's voice’ and to describe methods used to solicit and validate the ill child's reports of treatment-related symptoms and quality of life during palliative or end-of-life care.MethodsStudy methods included a targeted literature review from three literature databases to develop the description of the ‘child's voice’ and to provide evidence regarding the ability of children with cancer to give voice to their treatment experience.ResultsMany children ages 5–7 years and most children 8 years of age and older in treatment for cancer or receiving end-of-life care were able to validly report their symptoms, treatment experiences, and quality of life through qualitative and quantitative measures.DiscussionAlthough relevant literature is limited, research findings indicate that a majority of ill children and adolescents are able to report on their treatment-related symptoms and quality of life. The absence of the child's voice in palliative and end-of-life care jeopardizes best care efforts. We believe that seeking the ill child's voice in palliative and end-of-life care should now be standard of care." @default.
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• W2086948678 date "2012-12-01" @default.
• W2086948678 modified "2023-10-03" @default.
• W2086948678 title "The child's voice in pediatric palliative and end-of-life care" @default.
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• W2086948678 doi "https://doi.org/10.1179/1743291x12y.0000000035" @default.
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