Knowledge Is Power: Benefits, Risks, Hopes, and Decision-Making Reported by Parents Consenting to Next-Generation Sequencing for Children and Adolescents with Cancer
| Autor: | Mary Caples, Jessica M. Valdez, Katianne M. Howard Sharp, Annastasia A. Ouma, Liza-Marie Johnson, Lynn W. Harrison, Kim E. Nichols, Jami S. Gattuso, Michele Pritchard, Belinda N. Mandrell |
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| Rok vydání: | 2021 |
| Předmět: |
Parents
medicine.medical_specialty Adolescent media_common.quotation_subject Decision Making Disclosure Altruism Power (social and political) Informed consent Neoplasms medicine Humans Child media_common Informed Consent Oncology (nursing) business.industry Qualitative interviews Genomic sequencing Cancer High-Throughput Nucleotide Sequencing medicine.disease Pediatric cancer Family medicine Worry business |
| Zdroj: | Seminars in oncology nursing. 37(3) |
| ISSN: | 1878-3449 |
| Popis: | Objectives To qualitatively describe parent perspectives of next-generation genomic sequencing (NGS) for their children with cancer, including perceived benefits, risks, hopes/expectations, and decision-making process when consenting or not consenting to NGS and prior to result disclosure. Data Sources Qualitative interviews were used. Conclusion Altruism is an important factor in parents consenting to NGS testing, as well as making sense of their child's cancer and legacy building. Parents described realistic hopes and expectations associated with NGS participation. Although parents endorsed the likelihood of no medical benefit, those consenting to NGS felt there was no reason not to participate. Parents declining participation expressed avoidance of worry and parent guilt if a germline variant were to be disclosed. Implications for Nursing Practice As NGS evolves into a component of the routine diagnostic workup for pediatric cancer patients, genetic nurses play a role in conducting informed consent conversations and ensuring that patients and families have realistic hopes and expectations associated with NGS. |
| Databáze: | OpenAIRE |
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