Publication: No wrong decisions in an all‐wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma
No wrong decisions in an all‐wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma
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De Clercq, E., Grotzer, M., Landolt, M. A., Helversen, B., Flury, M., Rössler, J., Kurzo, A., & Streuli, J. C. (2022). No wrong decisions in an all‐wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma. Pediatric Blood & Cancer, 69(9), e29792. https://doi.org/10.1002/pbc.29792
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Background: Diffuse intrinsic pontine glioma (DIPG) is a rare, but lethal pediatric brain tumor with a median survival of less than 1 year. Existing treatment may prolong life and control symptoms, but may cause toxicity and side effects. In order to improve child- and family-centered care, we aimed to better understand the treatment decision-making experiences of parents, as studies on this topic are currently lacking. Procedure: The data for this study came from 24 semistructured interviews with parents whose children were diagnosed
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De Clercq, E., Grotzer, M., Landolt, M. A., Helversen, B., Flury, M., Rössler, J., Kurzo, A., & Streuli, J. C. (2022). No wrong decisions in an all‐wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma. Pediatric Blood & Cancer, 69(9), e29792. https://doi.org/10.1002/pbc.29792
